Liver Failure and cirrhosis death, anyone go through this?

If you have lost a friend or close relative to liver failure and cirhosis, please share with me the amount of time they had in "end stage". We are trying to get some idea of what to expect....I have posted on the liver forum...but decided to ask here as well. Thank you all for your time!
Mary Z

[Jim's son]

It's probably the most asked question by family members and friends. Unfortunately it's a really difficult queston to answer - it varies

Generally,  when a person stops taking food and fluids, is bedridden, is unable to effectively clear respiratory secretions, and has a significantly decreased level of consciousness then they are considered moribund - meaning imminent death, which could translate as having only hours or days left, but certainly not weeks. Until the person reaches this point there are only educated guesses

This is only reliable in the face of supportive care only. In other words no heroics. And an accurate assessment of level of consciousness may be skewed in the presence of drugs used to make the person comfortable. However, there is validity to the premise that pain will actually keep you alive longer, and it's always an ongoing challenge to find the balance of pain and/or anxiety control. Remember, too, that acute co-morbid events, ie: coronary, pulmonary or spontaneous bleeding and clotting can occur at any time and hasten death

Additionally, it is not uncommon for liver failure patients to wax and wane in terms of their mentation, confusion and overall state. Paradoxically, it's a laxative (lactulose) which can improve their mentation by converting and clearing amonium from the system - which is a function of a healthy liver

So it's a roller coaster I'm afraid.

[Mary Z]

Yes,
The rollar coaster you DONT want to be on. It has been difficult and she forgets things from one day to the next. Not everything...but her short term memory is bad...long term good. She is NOT drinking at least.  The lactulose is already being administered. Today Hospice came again and she thought she wasn't dying. She called me over to the house to tell her the "truth". I kept it honest and short. I said...your liver is not working and it is not making your prognosis very good.  I'm just the daughter-in-law and she had a daughter saying....we'll save you...you won't die. I went and got my husband. I feel so bad, but the daughter really is hurting her by telling her she will get a transplant when she is not a candidate, and will not qualify.  I can handle the illness, but not the well meaning people who want to give her "just one or two glasses of wine". They think they are helping, but it will kill her much more quickly!
Thank you for your response. It sounds like you have a lot of medical background.

[Anthem26]

My father, who had recently passed away in early June from liver cancer (he had cirrhosis and hepatitis too), endured pretty much all of the manifestations that Jim's son described... During his last days, my father was essentially absent to any physical activity. He was prone on his deathbed, mute, and deadlocked (like a vegetable). The only movements he made were swift and agonizing hand gestures (he would motion his hand over his crotch area when he leaked). My father, at that point, had stopped eating and taking in fluid, making him very listless and insensible (he would usually sleep most of the day with his breath dragging - it sounded as if he was grasping for air after being choked). Although he was physically blunt, he was still mentally able and felt (He managed to lift his spirits, gather the last of his strength and give my sister and I a hug before he left for hospice). When he arrived at the hospice center, he was relatively in the same state, except he was shedding tears all day and night when my mother was there to comfort his last hours (My father was a man who never showed his emotions, let alone talk about them. Through all the terrible tragedies, I've never seen my father shed a tear. He went through the deaths of two siblings and never cried about it, and yet here he was...the hug he gave my sister and I before he went to hospice was actually the only time he has shown any type of affection for us - but of course, we always knew that he loved us very much). He died the very next morning, right after when my mother gave him a kiss on the forehead and right when she went outside to give some calls to close family and friends (I believe he went that way so my mother wouldn't have to witness his death). His passing has suspended reality for us. It was way too soon and completely unfair. Although deeply sadden about his passing, it's still feels very surreal to think of him as being literally gone. Even though i know I'll never see him again, his presence and memory will continue to live on in my heart...

[Jim's son]

Anthem26 - you describe a traumatic experience, and I can empathize, as I've just recently  been through a similar experience with my dad.

You summarize almost identically the way I felt shortly following his death.

During the last days looking after my dad, I almost wished for his death in the hopes his suffering would be over. As such  I also thought I'd be greatful at that point, and that I could move forward knowing this terrible and sad ordeal was over.

As inexperience  taught me, I was very wrong about that. In fact it was only the beginning - at least for me.

I prounounced him dead May 25th at excactly 0221hrs - a date and time forever etched in memory, and I am no closer to moving forward from this point in time as I am re-living it.

For me the "sureal"-ness  changed into intense anxiety at times as the cold, hard reality sets in. There is also a sadness about me - an actual physical thing, I can feel behind my eyes, something I've never experienced before. There are times when I can block this, but only if I'm distracted. Under the surface it's always there.

So my life has changed dramatically, and I'm not the same person I was before. I am the worst person in the world to show you how to handle your grief, as I am failing at it miserably.

I just wanted you to know, you are not alone

[Mary Z]

Hey,
You know something......you are dealing with someone whom lost their own father ten years ago and their own mother seventeen years  ago. I am not thinking you are failing miserably......just being honest with someone who understands how awful it is to lose a family member and that sometime having medication is a GOOD thing. Do NOT fail to recognize that you have needs and must meet them. The people that say you should not have it are not thinking of you, just their predisposed notions that medication is NOT good. I believe it is for someone like you who is in distress. I care about you and wish and pray for you the best in the future~!

[Jim's son]

Mary

Thanks for your support and kindness

I'm in agreement with you in that your mother-in-law needs to know the truth. However, the liver has remarkable reserve (some people don't even show symptoms until it's 90% damaged), and I know of many who are still alive today who really should'nt be.

I would imagine a transplant would be out of the question, unless she is rich and/or famous. I know of very few people who would be willing to donate an organ to someone who has either willingly or unwitttingly destroyed their own

A family meeting involving the doctor and perhaps a social worker (I'm a big fan of SW) to discuss these issues might be a good idea. You may not achieve consensus, but at least you can say you tried. Besides, an objective third party is often useful in bringing some clarity to these difficult and emotional issues

Good luck. Thoughts are with you

[Old Hippie Chick]

I'm 51 F and have several illnesses that I am dealing with. Cancer, MS, Liver has enlarged to reach into my left ribcage and is pressing up against my stomach. So I have liver issues. Have had for many years. Now I have a Friend whos Mother is in final stage liver failure. This is a recently reunited bio-adoptive family with only 18 months with their Mother before her kidneys then liver failed on the 13th of this month. She was sent home to Hospice Care the 16th. She is a diabetic added to list.

Hospice care took Mother off 10mg morphine yesterday afternoon. Mother became restless, wanted out of bed, tried to get out of bed, the thoughts of restraints crossed their minds last night. She is unable to rest comfortably, pulling at clothes, picking at body, tossing hands and arms, then breaking finally to sleep, when she can.

Urine output is low, feet and legs are blue, body is swollen, but she will ralley to wake and see people as she has been able.

She has had conversations with unseen what would seem to be family members, who she had clearly told "Because I'm not ready to go! That's Why!". That was in last 24 hours.

No food, no water, no medication. Not even an air line for easier breathing.... I had thought I would use Hospice care when I am finally in need... But my God...what is happening here is not kind to the family or the patient. I would hate to think that this will be allowed to happen to me...... Thank God I live in Oregon where I can say when....

Any words of advice for my friend and her family.... any hints for me later?

[dlr2007]

I'm sorry to hear about your health problems. You are a very giving person to be helping your friend with her mother.
  I can;t believe Hospice is taking her off her morphine! They are supposed to make one's last days comfortable. My mother-in-law passed in March of this year and she had hospice- they were wonderful, I thought. But she was in a nursing home, withthe nurses administering Percoset, then Morphine and Ativan in her last couple days. I don't know if Hospice is anti-med- it wouldn't make sense if they were, since in the last stretch it should be about being relieving symptoms, not suffering through them.
  I just realized this post is from August. If youcheck back and read this- how's it going? I hope the issues with Hospice and meds got resolved.
  Best of luck to you with everything.
Hugs and Prayers,
Dee
  

[Andree for Tommy]

My boyfriend's dad just found out he has terminal cirrohisis of the liver.  They sent him home because they could no longer do anything for him.  I guess you could say he is in his final days.  No one knows what to expect - Hospice is coming in 3 days a week but he is mostly sleeping, very yellow and his ankles and face are swollen.  He is still eating ad his mom is giving him low sodium food plus who knows what medication.  The family has no clue what they are up for.  Can anyone help me with the signs of his final days.  Thanks - Andree  

[Tanya's Mom]

I lost my dear daughter 12-27-2004 from liver failure.  She was diagnosed with Biliary Atresia at two weeks of age.  Since then she had two liver transplants, one at age 13 and again at age 22.  Very successful surgeries.  Tanya became pregnant and soon after went into rejection, she was advised not to go through with the pregnancy but she chose her childs life over her own.  It wasn't long till she was also at home with Hospice.  They were wonderful with her.  We did have signs of her last days but we didn't want to see them coming.  She was only home for two days.  We lost her baby on Christmas morning and her two days later. Almost three years have passed and I don't know how people deal with such a loss.  My heart goes out to all of you!  Know that when we loose somone they no longer are in pain, no more needles, blood tests, pain, and suffering. They are at a better place.  We will miss them every day!

[Rose_in_Ohio]

When my husband died of cancer three years ago I took care of him at home with the help of Hospice and his last breaths were like a fish out of water.  I wondered why God put me on this journey and I still have to remind myself that God's ways are always right.  They may not make sense.  They may be mysterious, inexplicable, difficult and even painful.  But they are right.

My mother received tainted blood years ago and now she is in her final days of liver cirrhosis.  The last 36 hours I would never have been able to deal with this experience had it not been for the six month I was able to take care of my husband. I began to feed mom a teaspoon of mashed potatoes when  blood came spewing from her nose and mouth, black blood thick with clots that looked like garden slugs with bright red blood on them, this continued on and off for almost 24 hours.  I was able to remove most of the blood using about a ½ bottle of Shout and Tide in the laundry, some loads I did twice.  Quickly wiping the blood off the wood floor, spraying with Shout and mopping removed the stains before they set; finally I got smart, ran to Rite Aid for more under pads (30” x36”) and put them all around her and on the floor.  Hospice suggested withholding anything given orally, meds, food, and water because it might trigger another episode of vomiting (red blood is worse).   Thinking I had to give her something as her lips cracked from dryness I gave her an ice chip and started the vomiting one more time.   She finally fell into a restless sleep her hands fidgeting constantly even in sleep.   After praying and knowing she was in pain I gave her .5 ml of Oxycodone and a sip of water that she was able to hold down.   She has been deep asleep since 9 a.m. and it is a little after 7 p.m. now,  her cheeks are flushed and I believe she may be going into a comma that I read about earlier, not sure…not for me to know when, just to be here to love her.

I hoped reading this helps someone to be prepared, there was so much blood I really didn’t think I could handle another moment, but I am, and I’m glad to be able to be with her, she has done so much for me this is just a small gift I can give her.  

[cparobbins]

I don't know if this will comfort anyone, but we had a different experience when my mom passed away from liver failure last year. She was originally diagnosed with breast cancer, but with all the chemo, radiation, medication, etc., it was the resulting liver failure that took her life. We knew her death was coming, but we didn't know when. When she was diagnosed she was told she had less than 6 months to live. 6 YEARS later she died (from her liver failure). Here was her timeline:

1) Last Month: Not hungry (but she made herself eat cereal), more pain (from the cancer spread bones)

2) Last Week: Each day she slept more and more (personally, I think this is the 'warning' sign but we had no clue at the time). Her doctor told me in the hall (her stomach was enlarged) that it wouldn't be 'long'. I thought, 'we've been told that before...six years ago...so you never know". She was taking morphine, but not too much. She was up with us, laughing, coherent. She slept a slept a little more than usual, but who could blame her? We had no idea she would be gone in a week. My aunt came over though and said that by looking at her she would probably be gone within a week.

3) Last Two Days: Sleeping most of the day. When awake she was coherent, but would fall asleep even if sitting on couch (bless her heart, she got out of bed and was determined to come in the living room with us). THIS is when I started to getting scared (I mean, she had slept all day, all night, and then after finally getting up and joining us, she fell asleep immediately on the couch). She was NOT hungry or thirsty but took a few sips of water. Oh, she didn't use the bathroom ALL day (THIS IS A BIG SIGN but I've heard most people are in a coma state at this point, but not her). At this point, I was afraid something was wrong (another complication perhaps) but not death, not her, not yet.

4) Last Day: Not eating, drinking, no bathroom, and constantly sleeping made me SCARED. I remember waking her and saying, "Your scaring me". She replied, "Oh, I'm just tired. I'll be all right. I'm going to get better, don't worry." Unbelievable I think back now. . I called the doctor and he actually told me that while I should prepare myself for her death soon, that she wouldn't pass away for at least a few more days (he said there were other symptoms I would see first but I can't remember exactly what they were.... I only know she hadn't shown those signs yet). He said she would stop eating & drinking (that had just begun) and that she would sleep more and more into a coma-like state for up to 4 days and THEN would pass. Funny, I think back now, both she AND the doctor insisted she wasn't dying today!

5) I didn't care what the doctor said or what she said, I was scared so I slept with her that night. I couldn't sleep. I kept rubbing her back (watching a movie on her TV by the bed). Every once in a while she would mumble something (like anyone might do when they are dreaming). Several times I tried to wake her to take a sip of water or ask her if she was in pain. At first she would open her eyes, but it was like she didn't see anything, you know? I think at first she even tried to sip water from the straw, but immediately fell back to sleep. After that, she might move her arm or something, but I couldn't wake her up.  She just looked like she was getting a good night sleep.  I fell asleep with my arms around her at 4am. For some reason I woke up again at 6am... and she had passed.  What a blessing that I can look back and say she died in my arms, I guess.

I had prayed for the last 6 years that God take her in her sleep peacefully and He did. The ‘coma-like’ state that most go through is a blessing in my opinion.

I hope whatever your loved one experienced - or whatever you experience (if death is from liver failure) that it happens like that instead of the other side affects some go through. God Bless.

PS: My father-in-law is dying from esophageal cancer (smoking, etc) that has spread everywhere. They told my husband last night that dad had less than 30 days to live (what does that MEAN anyway??) and that it would be his liver that took him most likely. He appears yellow already, is not in pain, and can’t walk because of the other tumors. I hope he passes the way she did… I pray so anyway.

[LukeL]

I just lost my father to cirrhosis, he hastened his death by continuing to drink and not eat. It is really hard to say as some days a person can be good and others days bad, but you will generally see a progression of the disease.

A classic sign of end stage liver faliure is reversal of sleeping patterns and easy dosing off.  With my father, he was only in a coma for about 18 hours before he passed. Before I last say him awake, he was lethargic and somewhat confused but if you talked to him directly he would respond. Then when I came back in the morning he was in a coma like state but otherwise fine, then I came back 8 hours later and he was strugling for every breath ( chest and head moving up as if gasping for air) Then while I was at his side, he just stopped breathing and went peacfully.

[jo929]

My daughter passed away 6 years ago with liver problems the dr told her she only had so long to live she called me on the phone and one of the hospice workers were tellin her and very loudly now you ttwll you mother that you have 6wk to 3 mo to live i heard my daughter say to them dont you beleive in mirickles. then she got on the phone she did not know i heard this conversation and i got real upset about the nurses they acted like it was another day nothing bothered them she said mom do you still believe in mirickles i said of course i believe in mirckles-she made it-almost 6 wk i dont want to discuss all of it but i think that you should let her have her hope and stay out of it if you cannot give encouragement what does it hurt to let one hope. when they are dying that is the time to give them what they want and need hope you say you are the daughter in law stay out of it if you dont love her enough to let her hope i still miss my daughter but am glad she had that to hang onto instead of the thought od dying.no one wants ti discuss all of the things their loved ones go thru. the hospice nurses she had did not last long she got someome that cared.             god bless the hospice
                                                                               Jo                  

[jo929]

my heart goes out to you may god help you with all of your problems I think that with all of the meds in this world no one shoud suffer. i do beleive that a person should have the right to go with dignity but some dissagree saying that i am sorry is so inadequate if you need a frien let me know i will get my e mail to you i will stay in the forumn and i hope that you do also i have lots health issues but i do believe that you are special to help others          jo

[elmomdo]

My mother-in-law has been in the hospital for 50 days with complications from cirrhosis.  The doctor told us a month ago she is in "end stage liver disease".  We have been through several paracentesis, dialysis practically every day, the mental confusion, the bloating.  This is a horrible disease and a horrible way to go.  She seems to be improving one day, then falls back again the next.  The dialysis is not helping to remove the fluid at all, as it is not designed to.  She has the listlessness, can't be still at all, when she is awake at all.  She sleeps all day, with small moments of consciousness, decreasing more every day.  

The worst part of all of it is her doctors not knowing what to do.  They keep telling her "oh you'll get to go home by the end of the week", knowing we have no way of taking care of her at home.  They wanted us to take her off the TPN she was receiving, and to take her off of dialysis.  She ended up coming off the TPN because it was not helping her nutrition level to come up.  However, she is not eating, has no appetite.  We are probably going to be faced with taking her off dialysis soon, because it is doing nothing for her but wearing her out even more.

It is so hard on the family.  No knowing from one day to the next and having to live hour by hour.

[hope360]

Two months ago my father was diagnosed with peptic ulcers.  One month later he was in the hospital from blood in the stool and then had a biopsy and was told he had cirrhosis.  Two weeks later he was back in the ER and his kidneys were shutting down.  We have been told different diagnosis by every doctor.  Our family is very frustrated.  He has ascites, portal hypertension, diabetes, kidney disease, adema and varices that were recently banded.  Two weeks ago we found him in a coma with a blood sugar of 17.  He bounced back.  I finally talked him into living with me until our last doctors appointment when we were told he is doing great.  He now moved back to his apartment.  Can anyone please tell me with what he has going on if his time is limited?  I am very concerned and frustrated.  Sometimes I feel that the doctors don't know or don't want to tell us what is really going on.  He also has GAVE

[confused from TX]

i just lost my sister on may26,2008. she had liver failure (end stages) and she only lasted about a little less than a month.   my thoughts and prayers go out to you.

[Tiene]

My husband had an emergency TIPS procedure done 11-20-06. In the last month to two months he has gotten to where he does not sleep at nights but will sleep all day. He wont or cant get out of his pajamas some days and only moves from the sofa to the bed.  He has Hepatits C and Cirrhosis (acute). Can anyone tell me what to expect from here? He is having large mood swings, but his appetite is good, he gets confused and forgets more and more. I cannot get an honest answer from any of his Dr's and I truely just need to know if we are getting closer to the end or if it is just another bad time that is alot worse than all the others have been. All advice is apprecaited.

[REVRAT]

How is his eating habits and fluid intake? How he feels is normal for the disease as I have end stage cirrosis (cirrhosis) and hep, C ..my time shiftsand it will vary day to night for rest or sleep.A person has may sleep in day almost like we moved to the other side of the world. I sometimes go to sleep at night and next week ,I go outside and forget what i'm doing .neighbors  think I'm nuts(:     .Your moods change  and interest in things fall off but try to keep him active as possible.I've been fighting this with a NO!!!!SALT DIET AND GALLONS OF WATER. Have had fluid removed only once but daily doses of meds. I came down with this first but I lost a Brother with hep and cirrosis (cirrhosis) NOV.2006> This is nothing to be lightly dealt with.On his confusion he may be able to increase LACTULOSE for the time. My Doctor lets me tweek the doses for problems. Please check with Doctor first though.The lactulose takes the ammonia away but really is hard on body.Pajamas:::It don't matter but try to get him active .   IT WILL HELP!!

[jml1986]

April 13, 2008 I stood by my uncles bedside as he passed away from cirrhosis and liver cancer. Unlike most cirrhosis patients, this man lived for 15 yrs with his. Of course he went through all of the medical issues that all cirhosis patients go through such as diebetitis and Hep C and in the last couple of months liver cancer. We watched through the years as this man went from being a very vibrant man to a frail shell of what he had once been. His 15 years of cirrhosis was spent going from doctor to doctor as new symptoms would appear. He would get his stomach tapped every couple of months until he eventually had a stint put in 5 years before he died. The medications he was on varied, some did not have any side effects, and others made him talk out of his head.

Again unlike most cirrhosis patients, my uncle lived a very active life, he did not let his illiness stop him from living. Thankfully when he first was diagnosised, he stopped drinking and became involved in his church, which was something he truely enjoyed. This man enjoyed playing his guitar and singing, so he switched from singing in bars to singing in church and at nursing homes.

Two months before he died, he was diagnosised with the liver cancer. He was told at that point they would not give him and timeline as far as how long he had left, because according to all his doctors, noone knew why he had lived as long as he had already.

Exactly two months after the cancer diagnoisis, I got a call and went to the hospital. His day has started like it had everyday, he had gotten up and had did what errands he needed to do and had come into town and did some running. He got home at around six pm, and was going to get ready to go to church that night. As he got out of the car and was walking to the house, his liver gave out. He started coughing up blood.

My aunt, uncle and cousins decided he would be better off at the hospital so they called the ambulance. By the time the ambulance got him to the hospital, this man had turned the color of a banana. I am not just talking his eyes, he was yellow from head to toe, even his tongue was yellow.

Again he did not progress as most cirrhosis patients do. He stayed very much awake and lucid. Yes, he was still coughing up the blood, and evenually they had to switch to suctioning the blood out, but as he laid there, he wanted everyone to come in so he could talk to them. We spent from roughly 7 pm to 3 am talking to my uncle. He was in pain, but they did give him morphine to take the edge off, but he just had so much he wanted to say.

Well at 3 am they decided to move my uncle out of the emergency room and into a regular room. We explained it to him and told him we would be up to see him as soon as they got him settled. That was the last words we all said to him. He slipped in to a coma while they were moving him. We walked into his room at exactly 3:30, and he was just laying there peacefully. For the next 30 minutes, we stood around my uncles bed singing his favorite hymns as we watched his breathing get slower and slower. At 4:00 am, he took his last breathe. We just stood there for what seemed like the longest time after he passed. We shed a few tears, but also expressed that for the first time in 15 years, he had no pain. For that reason we could not help to feel somewhat relieved for him.

From there it was a flurry of funeral arrangements and people coming and going, and this brought it's own set of emotional issues that I will not go into.

I hope this gives you some idea of what we went through. I wish you the best.

[Tiene]

His eating habits are all over the board. He prior to this last couple weeks he would eat ( the salt free low protein diet ) like a man twice his size.  The last two weeks he can not or does not eat at all. Maybe jello and yogurt but that is all. The Dr increased his enulose and his spirolactone last week, but either that or somthing has just made him throw up all the time, all yesterday and all night last night.  He tells me he wants to do things ( sometimes ) but says he just cant get up to do it. He does not want to talk like we used to or have any type of affection ( hand holding, a kiss ) he is very very grouchy ( which is totally out of character ) and just seems so sad and miserable. He is a terrible shade of gray, this is new and i don't know what to think about that. Has this happened to you or your family? I cannot go to the Dr with him 99% of the time as I have to work, i am the only income and the insurance provider. We have friends who take him as his Dr is 4 hrs from here. He may know things he does not tell me.I don't know each day if this is the last day or if we have months or years left together. I love my husband and I don't want to "prepare" i just need ( for my sanity) to know what to expect. Am I crazy?? Here i am questioning and complaining and he is the one miserable and suffering each day. Thanks so much for the open conversations, i have no family where we live and thus no one to talk to. Thanks and my blessings to you

[jml1986]

The gray color usually comes for when the poison from the liver is released into the body. I don't know at what stage this occurs, but when I talked to the funeral director about my uncle being so yellow when he died and in the casket the yellow was gone and he look really good, they told me that generally the poison from the liver will cause the yellowing first and then after the person dies and the body sits for a while it turns very gray. They also said that generally the gray is hard to cover when they prepare the body for viewing. However where my uncle was concerned, they were able to cover well and remove the fluid from his stomach so well that he looked as good as he did when he was a young man.

[Tiene]

Thanks- This morning and last night he was up sitting on the couch, walking around the yard and although he did not look or sound good ( as he was doing alot of coughing and spitting ) he seemed to be on an UP spin. He was not by any means active but it was a 100% increase from the day prior. Still very gray and the ammonia smell in the house when i got home from work was very strong. I am starting to understand now that this really is a roller coaster ride. I know how i feel I cannot imagine how he does. thanks

[jml1986]

From what the doctors explained to us, the liver would give out and the signs would follow. Which is why my uncle was able to do what he did everyday on the day he died. After it gives out, death will soon follow.

I know this must be so hard on you to know what you near future holds, and for him it must be even worse. I can not imagine being the one walking around knowing I was going to die at any moment.

For my uncle, he was blessed with the ability to doubt what the doctors were telling him, because he had proved them wrong for so many years. Sadly he could not do that this time because of the cancer. But at least in his mind he had peace about it

[Tiene]

Thanks- I feel so terrible for him knowing this is going on, i don't know how he has done what he has done for the last 18 months. I do have another question inreference to you last note, since he had the TIPS procedure in Nov of 2006 does his liver work at all or is it "bypassed" ?? They said a year ago that about 8% of his liver was alive but was degenerating at a steady pace, I guess we have been blessed to have had all the time we have had. I pray every day for a miracle, i still believe in them. :]

[jml1986]

My uncle had is for 5 or 6 years, it did sustain his life. Eventually they say that the shunt will either get clogged, or that it will collapse as the liver continues to scar.

It is hard to say if your husbands liver is still working. If it is, I would say it is less then what they told you last year.

Have the doctors given you a time line?

[Tiene]

I am thinking they may have given him one and he did not relay it to me. I think he is at a stage where he thinks this is his problem and not affecting anyone else. I sent paperwork to the Dr yesterday to please fill out the Child Pughs Chart and the MELD chart and send back to me,  I am APPROVED for information from all of his DR's and i think I need to know so I can make sure I have the best possible assistance and treatments for him lined up for when he needs them. They have started him on a high does of neomyacin (sp?) for the ammonia. He was back to the pajamas and very gray last night when i got home from work. Curled up with 10 blankets on the floor and still freezing. He doesn't hardly drink anything at all this last week ( he used to have a drink constatly saying he was dying of thirst ).  I read and ask questions and read and there is so much information but none answers my questions like you have. thanks so much!

[jml1986]

You are so welcome. Please keep me posted on how he is doing, and if I can help you with anything else, please let me know.

[mulffy]

Why - oh why didn't I find this thread last year?
My husband was feeling bad -- he didn't start going to the Dr. until January. After a series of visits and over 13 different blood tests - he was mad at them. He said they didn't seem to know what was wrong with him, just getting old. He was all of 58!  He said he wasn't going to go back any more.  It wasn't until late July, when he was so sick I needed to drive him to the hospital, that I found out he knew all along what it was, he just chose not to tell me.  The symptoms -- the dropping of appetite, confusion, fluid retention -- they were all there.  It wasn't until July 20 that I saw the jaundice --  he had a visit to the ER on July 26, two days in the hospital (July 29-30) a dr. visit on Aug 6 , back to the ER on Aug 11 and he died on Aug 14.  His "release" to return to work was still on the kitchen table.
I wish he'd talked about it with me -- he planned a  short  vacation for us last May - and we had a good time, except for his fatigue.  But it was something he really wanted to do.  We went to Lousianna (just 2 states away) and he showed me all the places where he went/lived/hung out when he was young and was working down there. I see, in retrospect, that once we returned from that trip, it was downhill all the way.  We both talked of the future though, and of when he got better ---- I didn't "get it" even afte those July hospital visits -- shoot! The doctor told him he could go back to work!  (He later said my husband got an infection  and that's what did him in)   I got the picture though, the night before the final hospital run -- I came home from work, and he called to me "MA! we have a problem."  I went into the bedroom, he was sitting in his recliner (yes, we had one in the bedroom, he was more comfortable reclined than in bed)  and he'd thrown up blood all over himself.  
So, I'd guess his"final illness" lasted about 8 month -- but the "final stages" lasted from about July 20 - Aug 14. I did see the short-term memory loss -- I guess since about last spring.  I remember that I was wondering how he was doing at work,  and I wondered if it was the beginning of alzheimers'.   It seemed to come and go, some days, some hours were better than others. The last two days were pretty bad. They suggested I go home the night of Aug 11, and get some rest -- they'd moved him from the ER to Intensive Care.  I said goodnight to him, kissed his forehead, and went home for about 6 hours.  When I came back he was -- they said it wasn't a coma -- I don't know what it was. He did not respond to much - and only moaned with his eyes closed.  The Dr's asssured me he wasn't in pain, it was only the toxins had made their way to the brain.  But he tried to say one word during the day, and I can't be sure, but I think it was "hurts"  Is there a word for that state? Sometimes when we'd ask him to squeeze my hand he would, but most of the time he did not.
What I know of cirrhosis, is that it is a slow and painful death. My mother died years ago of cancer -- cirrhosis is not so very much different, is it.

[jml1986]

I sorry to hear that he has passed. I know it had to be really had on you. Sadly living is the hardest part. Remember we are all here for you through that as well.

[mat1956]

My Mom received blood after bypass surgery. the blood was contaminated. She got Hep. C. It was too late when she found out. My Mom did fairly well, I guess.I truly did not know how she felt. She did not want to worry me. Mom could not break down protein, therefore she was on restricted protein diet. She could adhere to some point until she would break down and have to eat a hot dog. At that time I would increase her Lactulose. When she would eat meats and I did not know. it didn't take long before the confusion staggering and aggressiveness would show it's ugly face. I would bring her to my house and adm. Lactulose every hour until she vomited or had diarrhea. Usually they occured at same time. It's awful watching someone you love dying and can do nothing. I was able to be with my Mom in ICU until she coded. It was Christmas Day. She actually had a massive MI and had been giving her meat on each tray/meal.They gave her a med IV and 2 mins later she coded. I will always they did something. I have the peace that she is no longer suffering and now can eat ALL the meat she wants even those awful chitterlings.

[mulffy]

Thanks for your note - it IS very hard. Reading these messages opened my eyes to a lot of things I should have seen. But too late for that now....

[crabbychops]

My husband has been a heavy drinker for 40 years and I think he is now suffering from severe liver problems.  His skin is yellow as are the whites of his eyes.  He is very bloated and his urine is dark brown.  He is still drinking about a litre of vodka per day and refuses to go to his doctor.  He is very tearful and falls regularly.  He oftens wets himself yet was a very proud clean person.  He seems very depressed.  I attend Al anon and realise that I cannot force him to seek medical help.  His bruises from falling are all over his body.  His eating is virtually non existant.  He is type 2 diabetic for the last 2 years but his taking of all his tablets is very intermittant.  Any advice or suggestions would be welcome.  He is 65, dying and not prepared to fight at all.  I'm broken hearted.

[mulffy]

My heart goes out to you, dear lady. Try to suggest to him that he get his affairs in order while he still can. The toxins that used to be filtered by the liver will eventually effect his thinking. We cannot offer advise/suggestions, because as you said, you cannot force him to seek medical help.  I will pray for him- and for you --- I wish I had something more positive to say. Sometimes, the suggestion about the "get you affairs in order" will shock a person - maybe then he'll go to the doctor?
God bless you -
mulffy

[ellenop118]

My mother died about 18 months ago of cirrhosis. I, too, kept wandering how much time as the medical people sort of kept me in the dark. After she died, I did read that if ascites develops, they usually only have about 2 years left. Sure enough, she had developed ascites just under 2 years before she died. Also, if there are varicies or any internal bleeding, it is not a good sign. I feel for you. It is a very tough disease, and can have denial going along with it. Keep searching for answers, and try to do what you can for your loved one. Best wishes.

[mauimalia]

I am still in shock as I type this.  My younger brother, age 39, died last Friday of heart failure, secondary to liver and kidney failure.  He was in the hospital for 6 weeks, on daily dialysis.  He had been a heavy drinker for over 20 years and suffered from depression.  No one could reach him.  He wouldn't go to the MD until my parents threatened him.  At this point he couldn't urinate, was severely jaundiced, abdomen distended and in total denial of the seriously of the disease.  I watched him vomit blood over and over and I constantly cleaned it up, attempting to comfort him.  It was terribly traumatic.  Funeral arrangements are being made.  People keep asking "why did he die?"  I do not want to say he drank himself to death.  I grieve for the life he couldn't realize and live.  I feel so alone.  If anyone would like to share, please email me at ***@****

[Momma11]

My heart goes out to you all.  Im so sorry you have had to go through this with your family and sorry for your family member in pain.

I am in such a state of panick right now i dont know what to do.  My mother in law is dyeing all by herself in a hospital in Colorado.  Her whole family is in California.  She moved out there for a boyfriend a few years back and her drinking got much worse.  My husband has always know this is how she will die and is not shocked by these occurances.  She was in the hospital 2 weeks ago they diagnosed her then with end stages of cirrhosis.  Dr's were really dooms day saying this is it.  But she seemed to bounce back - we made a plan that she would go into a detox to be medically cared for until she was in better health, then we were going to fly her out here so she could live in sober living and help her take a shot at a normal sober life something she has never experienced.  Then we get a phone call 2 days ago that she is back in hospital.  She is completley swollen, jaundice.  They are emptying the fluid in her stomache constantly (2 & a half liters a day) and giving her diuretics to get rid of even more fluid..  She has a note on her chart that states the plan is to order nutrition and Physical Therapy. But she has no strength at all, no appetite, everything she eats she loses immidiatley.  She has no control of her bowels and can barely talk to me.  She told me today that they keep giving her a ton of morphine and i just broke down cuz i know what that means.  The dr. today asked her how she would like to spend her last days and she wants to be over here in California with us which is what we all want but how in the world are we suppost to get her out here? I am so scared and feel so alone and frusterated.  Im trying to get power of attourney to order a feeding tube to get her back to health so she can be out here with her family but my husband is worried we will gain all her tons of thousands of medical bills if we take responsibility of power of attourney.  Im just so broken about this.  My husband is so numb and guarded.  I know she hasnt been the best mom but she is a person and is in in pain and my heart is so broken that we cant be with her.  I hurt for my husband so much too to realize how abandoned he has always felt by raising an alcholic mother instead of her raising him.  I understand how hes just absent and that brakes my heart haveing a son of our own and loving him so much i cant imagine choosing anything over him but i also know that she chose to drink because it worked for her you know? I mean that isnt the most pleasant life style - something had to have happend that made drinking more worth it than dealing with whatever it was sober.  I just wish i could scoop her up and fast forward it so she can be released or wish i could do something anything to help her???? I have no idea what to do? I feel completley helpless and exausted coming up with the same ideas that lead to nothing.

[mulffy]

Maulmalia,  My heart is breaking for you --  I came home from work just 33 weeks ago tonight, to find my husband in the same condition - he had thrown up on himself, and could not even get up out of his chair.  I cleaned up, then helped him to the shower.  I can still see him (the transparent shower door) leaning against the shower wall... .the next morning, no better, he went to the hospital, his liver completely shot, and his kidneys failing - in less than 48 hours he was dead.  I too, don't want to say he drank himself to death -- but that's what happened - over the course of 35 years.  
Please know I understand your pain - but I cannot write more right now -- it hurts too bad!!!!!!!
Maureen

[rudysis]

I have just lost My Dear Brother Rudy on 03/16/09 5:15pm to cirrhosis he was at end stage he was told in sept 08 he had 6 months or less he made it to the 6th month he was strong till the end, he was 52 a beautiful soul now he is running with the angels. He passed away at my moms house ,Hospice helped so much they are angels as rudy called them - Even tough we all knew the end was getting near there is no preperation for the final time its so hard.  I will write more at a later time to hard now. To all God Bless

[twinkletoes521]

I initially found this blog on March 24th just over a month ago.  I was trying to find answers and input on what signs to look for that would indicate that my dad was going downhill on his fight with end-stage cirrhosis. My father is a Vietnam Veteran with severe PTSD from the horrors he witnessed in Vietnam.  Exposure to Agent Orange coupled with his alcoholism led to his cirrhosis of the liver.  I live in North Florida and he in South Florida so there is over 700 miles in between us making it difficult to get an accurate picture of his true condition.  This made worse by the fact that his wife of 7 years is the enabler and has been hiding his true condition the entire time.  It wasn't until June 2005 that I realized he was sick when I came to visit and he looked ill and I noticed he was drinking much more.  His first brush with death happened in August 2005.  He ended up in the hospital with the varices and he ended up in ICU on life support because he asphyxiated on his own vomit/blood.  He got out of ICU 3 weeks later.  He stopped drinking for some time, but then his doctor made the mistake of telling him his liver was getting better.  That gave him the green light to drink again.  So he started drinking again, but this time he and his wife were hiding it from his daughters.  So out of the blue in October 2006 he ended up having the varices back up again and asphyxiated on his own blood vomit really bad this time.  He ended up in a medicine-induced coma, had about 5 strokes while in the coma, they took him off the meds and he almost didn’t wake up.  My sisters and I flew down to pray by his bedside.  After 12 hours of prayers, reading, singing and talking to him we went home and he woke up the next day.  Now the strokes had taken a bad toll on him.  He recovered partially, they put a shunt in his liver (which is last resort actions) and was discharged from the hospital in December 2006.  I visited him in January 2007 and he was not anything like he used to be.  He looked like he aged 15 years overnight.  His memory was bad; he couldn’t remember my name a lot or called me by the wrong name.  He would confuse me with my 2 other sisters and they weren’t in town visiting.  He called his wife by my mother’s name all the time and he was just in his own little world that seemed to be stuck like a broken record.  I didn’t seem him again until December 2007 when he and his wife drove up for Christmas.  It was at that time that we realized he was drinking again.  His wife was completely enabling him because he couldn’t drive…how else would he get it??!!  He was just as bad, if not worse, as he was when I saw him 11 months earlier.  His mind was just going because it was poisoned by the high ammonia levels from drinking and his liver couldn’t filter out the toxins.  I saw him again in September 2008 for my older sister’s wedding.  He was worse then.  He could barely walk, it would take him a very long time to respond during the limited conversations we had and he looked so detached.  There was a true emptiness behind his sad eyes.  Now we are at March 24, 2009 where his wife has told me he is swelling and having to get blood transfusions because he is bleeding internally and they can’t stop it.  They removed several liters of fluid off his abdomen this past week.  From what I read on this blog it seems really bad.  I have a feeling in my stomach that the end is near.  My sister says she plans to visit him in June.  I tell her he will be dead by then.  She asks me how I know and I say, “I don’t think he’ll make it through the month…I can feel it”.  4 days after I find this blog he falls in the middle of the night and hits his head bad on the tile flooring.  He ends up in ICU with two hematomas (blood clots) in between his skull and his brain.  They perform brain surgery the day before his 62nd birthday.  He seems to be recovering over the next couple days, but he is still on life support because he isn’t fully responsive.  Within 7 days of his brain surgery, his lung collapses.  He also has COPD.  The doctors are trying to stabilize him enough to get him into special care rehab, but they start losing hope because he stops being responsive.  He will only try to open his eyes when you call his name.  His wife is withholding information on his real condition and because of HIPAA laws the doctors and nurses won’t tell me what is really going on.  Finally, on Wednesday, April 7th, a nurse asks me why I haven’t come to see him.  She assumes I know how bad he is, but his wife is so delusional she kept lying to us.  The nurse told me I needed to get down there ASAP to see him.  My husband and I leave two days later and arrive Friday night, April 10th.  We see him ICU.  He looks horrible. He is dark yellow.  I find out when I get there he actually has double pneumonia and septicemia.  The next day as we were getting in our car to go to the hospital we get a call that he is going downhill fast. His heart rate is all over the place up and down.  We get there 10 minutes later at about 11:45 a.m.  The nurses told me he was waiting for me to get there because he was fighting so we could look each other in the eyes one last time and so I could talk to him this last time.  I held his cold hand and petted his hot cheek. I got my two sisters on two different cell phone speaker phones to tell their father they loved him and tell him just how wonderful a father he is.  We played his favorite music, Luciano Pavarotti, to help comfort him.  He was shaking and all the machines are going haywire because his heart rate is up and down.  He started having seizures at around 12:45 p.m. and at 1:13 p.m. on April 11th my dad’s eyes rolled back into his head, his body went still and his hand went limp in my embrace.  After his decade’s long battle with PTSD and 4 year battle with cirrhosis, he went home to the Lord to finally find peace.  

If you are contemplating on getting to your family member to be with them in their final moments then I encourage it.  However, if possible, I encourage you to bring someone with you that can be your rock because it will be probably the most difficult thing you go through.  I had my wonderful and supportive husband with me the whole time.  If it wasn’t for him, I can’t imagine how I would have coped.  

Lastly, my prayers go out to all of you and your loved ones.  If you are suffering from cirrhosis, please take care of yourself.  How you treat your body can help you live longer to enjoy life and loved ones.  

God bless you all,
Angela

[katy48]

I am currently watching my mother die from hepatitis c, liver cancer, and cirrhosis (from the other diseases, not drinking... she never drank).  I've watched this tiny woman lay in the hospital for almost a week now, they are allowing her to stay here, even though the doctor has said she should be in hospice.  She spent today writhing in agonizing pain.  In her confusion, she didn't know that she had to let the nurses know that she needed pain meds, so I had to call the nurses station and let them know.  She has been in and out of her head for the last couple of days, but that has been going on for a while, though it's been much worse lately.  As I said, today when I got there, she was again in severe pain.  They administered Toradol through I.V., and it seemed to have no effect at all. After about an hour of watching her still struggling so much with the pain, I went to the nurses station and asked them if she could have something else for the pain.  They then administered morphine through I.V. and after about 15 minutes she was finally able to rest.  This wonderful lady is Japanese and has the "Save Face" attitude, where you swallow your emotions.  I think she thought it would make you appear weak if you were to cry.  I am 47 years old and have seen her cry only one time - at my fathers memorial service at Arlington National Cemetery.  Due to and ice storm between our home and there, it was postponed until some 6 weeks after the funeral.  At the funeral, she never shed a tear.  Almost did once, but stiffened and swallowed it.  Today I watched her cry in pain.  It was the most heartbreaking thing I've ever experienced.  My heart goes out to all of you who have lost your loved ones to this slooooow, painful death.  
When I left the hospital tonight, they had her on oxygen, but her breathing had become very labored, and the swelling in her abdomen and legs was unreal.  As my sister and I left her room, we noticed a "rattle" was developing.  It's apparent that the fluid is getting into her lungs.  They told me she will most likely make it another day or two, that it would be fine for us to go home tonight.  I pray that she makes it through the night until we get back in the morning.  I want to be holding her hand when it is her time to go.  And while I selfishly pray that she lasts til I get back there, I also pray that he ends her suffering soon.  No one, NOOO One deserves to die like this.  It's awful.

[arneeb]

We buried Mike's brother 4 years ago... I met Steve that day on his deathbed in St.Paul, MN hospital... shortly after that... Mike came down with Cirhosis too... has had two shunts put in... and many procedures... he is bed bound... depressed... little appetite... and insists on drinking.... some days I pray it will end soon... then guiltily... ask forgiveness... I have no family... his is far away... I work ...take care of him.. and return to work.. knowing that one day he will not be there... and I will be all alone... and I never know when the and will hit .. and I have all of the above to look forward to.. I pray God gives us both the strength...

[cookie0820]

my sister is an alcholic,  she has been in rehab  5 times, also so sorry for what she is putting the family thru.  She has been told she has cirhosis stage 2 I believe.  I believe this last time after being in the hospital for 4 days, and many thousands of dollars later,  she drink the day she came home.  My other sister and I really don't know what to do,  we know we will be buring our sister.  Any advice would be great

[JerseyGirl30]

On June 16, three days before you put up your post, I celebrated my sisters 31st birthday. All I can do is remember how excited we were last year when we were planning her 30th! She's two years my senior and was really excited about her birthday. Unfortunatley, my sister is not here to celebrate her 31st with me. Not too long ago she was with me..she was the one with all the energy in the world..beautiful smile, selfless in all her actions, a true angel to the family. My sister was not an alcoholic, she has never been sick in her life actually..never even broke a bone..She became ill towards the end of November, right around thanksgiving..her symptoms were minimal..a little bit of vomiting, no appetite and bloating. Turns out she was suffering from cirrhosis..the next couple of weeks she went through several tests. They were unable to find a cause for her liver disease and continued to test..she and I continued to plan Christmas, New Years and even inauguration...by Christmas my sisters liver had failed..she'd already gone into renal failure and she was intubated. We had her funeral on New Years Eve.  You see, even the worst case scenerio was a liver transplant...never did we think death. I didn't have the opportunity to expect the loss of my only sybling...if I had I would have told her how much I love her, how much she means to me, how wonderful she is... I would have prayed with her, asked her about her regrets..what I can do to make things better. I'm sorry for what you are going through...I would suggest you take advantage of the time that you have. I would also suggest that you be grateful and express your gratefulness for having another sister to go through this with. It's a horrible thing to go through when you know that no one in the world feels the loss the way you do. I participated in the Liver Life Walk by the ALF. It kind of made me feel better to see other people who were going through something similar. My sister was never diagnosed. Cause of death was liver failure (unknown cause). I hope that my participation in the American Liver Foundations will help the cause of finding better treatments to be able to cure liver disease.
I will pray for your family and wish you well.
Take care
JerseyGirl

[Bob_E_S]

My wife died on June 18, 2009.  I was away on a trip and could not reach her by phone.  I had to have the police break the door and they found her on the kitchen floor.  The autopsy cause of death was hepatic cirrohis.  She was a heavy drinker and I could not get her to quit.  She would hide vodka (undectable on the breath) in the house and I would find it and throw it away but she always bought more.   I basically gave up and over the last year and a half, we were not close.

About 2 years ago, she began to have digestive problems and had to go to the bathroom more than 20 times a day.  She stopped eating except for yogurt.  She went to a big time hospital and they diagnosed her with celliac disease.  Near the end, she could not walk more than 15 feet without stopping to catch her breath.  

Oh God, it hurts so bad.  I should have done more to get her into a treatment program

[isom_k]

My husband has liver cirrhosis,he has had it for about 8 years.aprox.4 years ago he was put in the hospital with veracies,he was bleeding inside his stomache. I guess a veign ruptured.He does not have hep. He has a fatty liver from drinking,medications,and tylenol.He is on Spironalactone,Lasix,Nadalol,lactalose for memory,He also has diabetes,slight parkensons,and high blood pressure(under controll so far)They have increased his spironalactone,his lasix to double every other day,He just turned 74.I am 54 and we have been married for 30 years.It breaks my heart to see him go through this,I love him so much.Our doctors have given us no clue as what to expect,he sleeps a lot,and is confused a lot of the time.I am a dietaty manager for a assisted living home,specialising in Alzheimers.So we dont do too bad with his diet.except he likes a lot of things hes not supposed to have due to his diabetes.He isnt feeling well,he cried the other day(unusual for him)but i let him know it was good to cry.Then that night he couldnt sleep,he said he kept having dreams of things that happened in his life.He is also on amatriptoline for sleeping.He has went from 230 to 189 in the last month or so.The only thing i know about liver cirrhosis is what i've read online.Does anyone know what stage he is in?Or what can i expect.I am taking care of him by myself.Should i ask my doctor when will he need hospice?I have to work,we only recieve his s/sec.and a small retirement.I quit my job to stay home with him for the last 7 months,some things have happened there and they want me back.I guess i will have to hire someone to stay with him while i work.As i dont think he will be ok alone while im gone.I dont know what to do...Please help with any information anyone might have....Kathie

[Pebbles812]

my sister died of liver failure, heart failure and kidney failure 2 weeks ago.  She was always healthy and active before this at 47 went swimming every day doing 40 lengths. She had been sneaking alchohol every day for 18 months without our knowledge, along with all her medication as she suffered from depression & menapause tablets following several deaths in the family one after anther to cancer, early last year, before that she never drank.  Her death was very sudden we got the call at 12pm to say her organs were failing and she was on life support and she died peacefully under sedation 5 hours later (well we hope so).  It was too late for my sister to have any kind of transplants.  I came on this forum as someone told me liver failure is very painful and me & my mum are finding this hard to cope with right now but after reading all your comments I feel better so thankyou x

[ann3150]

My beautiful son died 4/26/09 at the age of 37 from Hep C & Cirrhosis. he had been an alcoholic since probably the age of 17. We had an intervention & rehab several years ago but he just kept on drinking. I believe he was hiding the symtoms (symptoms) for several months. His roommate finaly called me & said that my son was sick & should go to the Drs. By that time he was very yellow including the whites of his eyes, his stomach was bloated & his feet were swollen. he spent several weeks in the hospital but it was all too late. The Dr told us to take him home on Hospic because he its best to die at home. We brought him home under Hospic care & within 48 hrs he was in a coma & within 18 hrs he had passed. I will never forget how scared he looked (or maybe it was confussion) especially when he was throwing up blood. I am still grieving his death, he had a very kind heart but was battling his addiction & it finally won. This kind of death is very similar to cancer. Not a painless death for the patient or the family.

[mom2bethandtori]

My father is 61, today his mother died(of old age) and I can not tell him, as the Dr is unsure of how he will react he is in the hospital with cirrouses(sp) sorry cant spell, he is being drained every 4-5 days, getting about 4 liters at a shot, he refuses all other medications, and the docs let him have a few (3) drinks a day, as they say this is the end, recently he has gotten very confused(read military takin over the hospital)confused, and paranoid, he threatened to call the cops on me today because he thinks I am stealing all his money, his feet are swollen, his bellie distened(depite being drained) and his arm's and face are so thin, I sometimes think he may break just from looking at him. And the worst part's about all this is 1) my Mom died 9 years ago from lung cancer, and she wanted to live, and my Dad did this to himself. 2) Trying to explain to my 9 year old why Opa is so sick and why the Dr's can't fix him.
I hope no one else has to deal with the same type of behavior because it is very hard on your pshycie, to have someone you are trying to help accuses you of stealing, oh and he says my Mom is alive and I am just hiding her......Sorry not much point to this other then had to rant to someone.

[thankGodAlways]

I have been meaning to post on this website for a while.  Today I lost a very amazing woman from my life.  My aunt has been battling liver cancer for the past 5 years.  She was diagnosed 10 years ago with hepatitis C from a blood transfusion she had had in the 70s.  Shortly before being diagnosed with liver cancer, she had developed cirrhosis.  What kills me is that I'm currently a medical student and know so much more about hepatitis and cirrhosis now towards the end of my degree than when this was all starting to affect her.  I sort of took a backseat role in her care, just assuming her doctors knew what they were doing.  To my disappointment, I later found out they were clueless.  

A couple of years after my aunt developed liver cancer, we took her to a liver specialist about an hour away because we felt her current hepatologist wasn't helping much at all.  Without really reviewing her history and just recognizing that she had liver cancer, he immediately laughed when I suggested  a liver transplant.  To this day, I can't figure out if he was just a bad doctor or didn't figure things out, or just didn't care.  It was in the early stages of cancer, a prime time to evaluate a patient for transplant.  Her regular hepatologist said she only had 2 years to live once she was diagnosed with liver cancer and never mentioned the word transplant.  Then once the other live doctor said transplant was not an option, we left that idea alone.  A couple of years later (about 6 months ago now), I attended a lecture at my medical school about hepatitis C.  Afterwards, I talked to the guest speaker and he got me in touch with a liver transplant specialist in another state who would definitely be able to help. The course of my aunt's disease was like being an a roller coaster with lows and then highs when the idea of transplant came up.  I knew by this point that it was her only chance of survival.  

So we got my aunt to the liver transplant specialist a couple of weeks later.  He reviewed her chart and asked, why hasn't she been evaluated for a transplant? We told him we had been asking that question for years and thought we just didn't know enough.  He decided to do the whole transplant evaluation for her that day, including an MRI, echocardiogram, chest xray, blood work, etc etc.  We had made appointments from each department to have it all done.  He also had a social worker there with him who looked into the financial aspect of it all.  Things were looking hopeful again until the social worker came back with some bad news.  Because it was out of state, insurance wouldn't pay the whole thing, only 80% (my aunt had a state based insurance policy).  The doctor there was so nice and he said if we found a reason why her primary hepatologist hadn't done a transplant, like facilities or diagnostic equipment, we could convince insurance to pay.  He called her primary hepatologist and was told that the doctor there had done a transplant evaluation and had his reasons for not going through with putting her on the list. All he had offered her was the chemo drug Nexavar, which she had a really bad reaction to the first time she took it.  He basically told her, either take this medication or you're going to die.  I looked through a bunch of articles just to find out this drug just extends life a couple of months if it works at all.  Quality vs quantity is a big issue here.

Days went by and I was impatient so I called the supposed doctor who did the transplant evaluation just to find out that an evaluation was never ordered!!  What kind of medicine is that? He completely lied to the liver transplant specialist.  I was furious and battled with insurance and with the doctors she had originally been seeing just to get no where fast.  On top of it all, I was studying for my licensing boards.  

Time went by even more until the past month.  She started to develop ascites regularly.  She was hospitalized once recently for hepatic encephalopathy triggered by gastroenteritis.  She was regularly on the lactulose, but had a lot of other issues.  She was a diabetic also.  These past two weeks were by far the worst.  The most recent cat scan showed that the cancer spread to her bile duct and kidneys.  They also did an echo and found a huge right sided tumor in her heart.  This caused her to have the worst swelling in her feet I've ever seen.  It was actually very painful for her.  She could barely walk from the amount of fluid in her legs and feet.  We would have to put her in a wheelchair just to take her 10 feet away to the bathroom.  

She was in so much pain on Wednesday in her abdomen and back.  We decided to move her to hospice (which took a while to set up believe it or not) and the doctor gave her morphine.  They at this point decided to stop all of her meds.  She entered into a hepatic coma the next day and was breathing kind of slow.  Once in a while she would squeeze our hands and try to say something.  We said hi to her and she seemed to mouth it back.  She didn't appear to be in any pain though.  Her kidneys had obviously shut down by this point (there was very little fluid in the foley catheter bag and it was very red), she had really bad ascites and edema, and she clearly had fluid in her lungs.  Her normal jaundice became much worse and even her tears were tainted yellow.  I was afraid to leave her that night because it seemed like she didn't have much time left.  But my parents made me leave.  The next day, today, her breathing was significantly more labored, and she had blood coming out of the sides of her mouth.  Still no urine output and her throat was filled with secretions. She hadn't been given any pain meds since Wednesday.  Late this morning, she started grunting and breathing even more shallowly.  It appeared as though she was in pain.  The doctor gave her a small dose of dilaudid.  Shortly thereafter, her breathing slowed significantly (less than 6/minute) and we knew the end was near.  We sang songs to her and prayed with her.  She passed in peace, trying to mouth something (it seriously looked like I love you, but there's no way to tell).

It's so easy to blame myself for not trying harder to push for the transplant, especially with the medical background I have now.   I'm trying so hard not to. I was willing to be a living donor as well as my other aunt.  However, now that she has passed, a certain peace has entered our lives.  She had been suffering so much up until today when she went home to heaven.

I hope this long drawn out story helps someone out there.  This is by far the hardest thing I've ever gone through and I hope you can be as lucky as my aunt was to be surrounded by her family til the end of her life.

[thankGodAlways]

Rereading my post, I forgot to mention that my aunt lived for 6 years with the liver cancer.  She was told she wouldn't make it past 2 (the statistics say most patients don't).  She beat the odds in so many ways.  Also, for those patients who haven't been evaluated for a liver transplant, type the Milan criteria into google.  These are specific guidelines for who should and should not receive a liver transplant.  Just because a patient has liver cancer does not mean they are not a candidate for transplantation.  

May God rest her soul.

[Bethsmom227]

My mother has been admitted to Vanderbilt hosp this afternoon with the hopes of possibly making her more comfortable and liver transplant-but will not know about transplant for 3 days...she has had hep c for 20 years...my mother refused the interferon over 10 yrs ago to take the natural healing way...she immediately quit drinking any alcohol(which she never really drank anyways), she quit eating any red meats due to vasculitis which i have not completely connected this to hep c besides finding out (yesterday) that blood vessels burst that can't push blood into the liver...
her stomach legs and feet have been very swollen with fluid and the diuretic med is no longer pulling off the fluid...she had her stomach tapped yesterday and 3 pints were drawn off, but the fluid has returned today... she is confused at times but tries to put up a front that she is fine-prob to protect me, her only child thats father passed away just 6 months ago...we took what i thought would be our last vacation in july to the beach which is yearly tradition with our fam. my mother was very sick vomiting, going to bathroom alot pretty much just slept all the time and the nose bleeds started then...she is still eating barely tho but her blood sugar drops very very low in early mornings, below 40 sometimes...she has been admitted before but in smaller hosp that could not care for hep c or not enough knowledge of it to treat...only to get blood sugar stable and go home...2 days ago her right let turned completely red and has now turned brown...she says its healing but doesn't sound right...i am about to go to hosp to just stay with her and find out more info...everything ive learned has been thru internet...doctors are very vague with me and i don't know what is really the truth besides the hep c and liver failure will take her life...i have learned so much from reading everyone's comments...i feel i should be prepared for the worst....i am very scared and do not want to see my mother suffer in such a way...she is a very sweet and kind woman...i hope to report back to here some improvement as i would love to see my 64 yr old mother live for few more years!!! God Bless you all and all your loved ones!

[asger]

dear all,

i hope that you all are well, i have a question please help my father has cirrhosis as he got admitted on Wednesday his condition is not bad now after going to the hospital yesterday he was smiling his liver is damaged but it does function his kidney is fine the problem is his lungs they have water as he cannot walk a distance he breathes alot and yesterday late night he saw a dead body he'e memory is not well now he thinks he is at home he imagen things like he is in another place the later on he gets his senses it makes me cry i swear allah knows then he told me he keeps seeing a guy wants to hit him but he can stand he can eat the doc says he has alcohol problems as there is no alcohol now i want to know if its the medicine making him feel that way or what else could it be i cannot sleep at all i am worried alot he has no good memory i just told me come with my father as he is my father so u can imagine how the situation is please help.

asger
***@****
255 004 004004 please help me with advise  

[pigginlovely]

my brother has turned 40 today , a day we didnt think we would see, he has cirrhosis and has been a drinker since he was 17yrs old, i have been reading all the comments and have taken to read the exact same symptons bleeding, both anal and oral, vomiting, jaundice, accumilation of fluid round the ankles and stomach, weight loss, depressed appetite, he was in itu in dec 2008 for 8weeks with septacima, pneumonia, he has had blood transfusions in the last 4 weeks he will fall asleep anywhere, and in the last 3 weeks he has been knocked down by vehicles due to his confused state no only due to alcohol but also to confusion, he refuses to take medication unless he feels really bad and gets scared he then feels better and goes off for another drink, today he woke up being sick and had a severe headache and generally feels poorly someway to celebrate being 40. I live 300hundred miles away from him but my sister takes care of him and as you can imagine i phone everyday at least 3 times a day just to check he is ok, this disease is frustating, and there are never no answers, he saw the specailist yesterday who said 6mths to live if you dont give up drinking, he drinks because his partner with whom he has a son with was murdered 3 years ago and he cant live without her, im grieving already because i dont know how to cope with this its destroys everything and people dont understand that its a disease they cant control, im sorry but i feel really angry as my only brother my little brother is having no quality of life at the moment in pain everyday and in and out of hospital anyone with any medical knowledge or simalar experiences some advice would be gratefully recieved .

[egg99]

Thank you all I've found all your stories so very moving and helpful, I feel ashamd to be asking but I think I have  problem & too scareed to ask for help. I have been feeling very sick and nauseous for several weeks, getting worse, gradually losing my appetite & vomiting, feeling very confused & forgetful, still working but achieving vry little just managing to be there really. I'm very scared as I do drink a lot and have had stabbing pains in stomach recently. Any advice much appreciated

[tammies]

I came on here to find out what I should do! my step dad was diagonosed 6 years ago with sorosis of the liver and hepititis (hepatitis) C and cancer on his liver, he quit drinking and smoking and turned his life around. My real father hasnt been a part of my life and my mom is an alcoholic. My mom never even married my stepdad they only dated for 6 months but unlike anyone in my family, he was there for me.
He always treated me like an equal and not just some dumb kid. He went to Vancouver Hospital to get kemo in his leg to stop the cancer on his liver and his health crashed right then and there. He told me that the doctors told him that he died on the operating table. I decided to stay with a friend in Vancouver so I could be there for him, because his sisters couldnt afford to come back and forth. The rollercoaster ride is horrible...one day he would be happy and eating and seemingly health  and the next upset, cranky, sad, with no appitite. Then his sisters and him decided he would be better off in Victoria BC so that it would be easier for them to visit him on the island. I didnt understand? Vancouver was just fine! his docs were all on his side but he was upset cause he wasnt getting as many visitors. He was in Vic for about 3 weeks when he decided he didnt want to fight any more and was recently put in palative care in Courtenay BC

His sisters said they didnt think it would be wise for me to come all the way from Calgary Ab to Courtenay BC to see him on his last days. I had come to terms with it but then my friend called me and offered to pay for my plane ticket stating I might regret it if Im not there for him. My flight leaves tomorrow morning and Im going to be on it because of what "twinkletoes 521 said.
His sisters told me that he probably wont even know Im there, but if theres a chance I wanna take it. I wont have a support group there but I need to be there for my stepdad no matter what!
I keep thinking "he would do it for me"  I dont know what I'll do without him. Whenever I needed someone to talk to or I needed somewhere to stay he was Always there for me.
I sure hope I can handle living without him cause he was my rock!

Sincerly TH

[pigginlovely]

please go to see your doctor as soon as possible and get some expert advice, all your seeing here is what we are going through you really need to make the first step to having your health back, i know its prob frightening but you really need medical advice and under the circumstances you explain i would make it a priorty. Good luck .

[hatelife101]

I lost my father on Sept 29th, 2009.  He was very sick from liver cirrhosis, but would not show he was sick.  He was very sick in 2005 also from liver cirrhosis and the nurses told us that he would not make it, but luckly he did.  He stayed alcohol and smoke free for 5 years and once again started occasionally drinking and smoking. This eventually led to his same old drinking habits as before, drinking vodka straight, all day and night.  We noticed his eyes and skin turning yellow as they did before, but we expected him to cut down on drinking, but he didn't.  Even though he was very sick inside, he never showed it and kept it inside.  He finally said he wanted to go to the hospital and our family went with him on Monday Sept 21st 2009.  He was admited to the ER and was getting tests done. We saw him on tuesday afternoon and he was still in the ER, he looked fine, talking and walking. Later on in the evening, while the doctors were putting a camera in him to see his organs, he started to bleed very heavily from his mouth and nose.  This sudden loss of blood led to cardiac arrest, but the doctors resesatated him.  Since then he was on drug indused coma, but even when he was off that drug, did not show signs of cautiousness.  He was then put on life support and many medications.  The nurses and doctors took very good care of him, giving him alot of medical attention.  We expected things to get better, like they did in 2005.  While in the ICU, he was bleeding from his mouth and nose alot.  He was given blood transfusions to replace the lost blood.  A week later on Tuesday, September 29th, 2009, he passed away.  My family and I miss him very much, we know he is in a better place now.  My father was a very great and respected man and will be missed by many.

To those of you that have a loved one who shows signs on liver cirrhosis, take them to seek medical attention immediately.  There condition will not get better by itself, it will only get worse.  Some of the symptoms my father showed was:
- Yellow eyes and skin
- Easily brusing
- Not eating
- Blood in urine or feces
- Unusual comments/behaviors
- Bloated/Swollen stomach
- Swollen Feet

Liver cirrhosis is more likely curable the earlier you seek medical attention.

I came to this site during the time my father was in the hospital and many people said they saw the same things we saw on my father.  I can still see the images of the blood gushing out of his mouth and nose.  The lose of a loved one is very hard to deal with.  I still can not believe this has happened because it seems like it has all been a very bad dream.  
If you or a loved one shows signs of sever liver cirrhosis, seek medication attention right away.  I wish we did.

I wish you all the best.

[Daddyspumpkin]

To Anyone listening, My mom has had primary billiary cirrhosis since 1998. Well that is when she was diagnosed. She has since been diagnosed with type 2 diabetes, congestive heart failure, pulmonary hypertension or also known as portal hypertension. She has the varisies and ascities and her abdomen looks distended the majority of the time. We almost lost her about 2 months ago due to acute renal failure. I spoke to the doc then and he said she may have a few months. Of course I know he is not god and cannot tell me when. No one can do that. He also cannot tell me a course of action or when she will need hospice. I am so frustrated. I want to know what we are going to do. She is in and out of the hospital on a weekly basis from the hepatic encepalopothy. Which is the high blood ammonia levels. Hers was 122 just the other day. They get her back to where she can function and send her back home. I for one am ready for some answers. I want to know when we are doing hospice and when are they gonna stop running in circles. She has told them she is done and is ready to leave this world. Her emotions and personality are not what they once were. She has always been a rather hard person to deal with. Now she is meaner than normal and shows no emotion. I know sick people are grumpy and I understand that. Her mind just is'nt there as much anymore. She has made very poor choices with many things lately and have allowed people to take advantage of her. She moved people she did not know into her home. They have stolen alot from her and her bank accounts. So we are dealing with all that with the police, Of course the thing is, when they stole from her her ammonia was high. So we cannot press charges due to that, but were able to evict them. It really is a huge mess.All if these decisions are out of character for her. She was always one with alot of tact, who never let people get one over on her. She was always one step ahead. I just want an answer, a simple answer I guess. I know there is'nt one though. I feel alone and like no one around me understand. I just turned 30. Lost my daddy to lung cancer 3 years ago. I have a 4 year old and 3 month old and I am my moms full time caregiver. I just want to scream. Thank you to who ever will listen.

[franky4993]

I just had a friend who passed away November 8th 2009.  She was diagnosed with liver failure due to cirrhosis on October 23rd.  She had already become jaundiced.  When I was told on the 2nd of November she had just had her catherter removed.  It was replaced again on the 4th.  They had tried giving her Human albumin to help her kidneys but they failed as well.  She was sent home on the 6th.  She was still talking and seemed with it until the next morning.  She then was confused and very tired.   We gave her last pill form medication at 1:45.  We then kept her as comfortable as possible and she slowly slipped in to a coma.  We continually gave her meds to keep her anxiety down and pain meds, at approximately 10:30 she was no longer swallowing.  She then passed away at 5:45 am.  It was the hardest thing I have ever watched.  She was unaware but so many of her friends and family suffered with her and for her.  She was only 49.  

[yattwood]

My husband died on 29 June 2009.

He also suffered from severe psoriatic arthritis and wasting of his musculature; he had been unable to walk since November, 2007.

In March, 2009, he fell, and I could not pick him him; I called 911, and they took him to the local hospital. He signed himself out AMA (Against Medical Advice)

In mid-April 2009, he fell, again, I could neither pick him up, nor get him to respond at all; I called 911, again, he was taken to the local hospital, again, and was kept for 3 days. I was told at the time that he had "elevated liver enzymes", and that he was going through alcohol withdrawal. I wanted to totally get him off of alcohol (he was mixing gin with water because his hands and limbs would swell, without it, as well as taking acetaminophen and hydrocodone (Vicodin) - not an auspicious combination).  In addition, he had been on Celebrex and Etanercept for the psoriatic arthritis, but had discontinued taking both of them due to concerns over liver damage (!).

From this visit, he was referred to a pain management specialist, but it took me ovr a month to get an appointment. When I finally got an appointment, the specialist asked him a lot of questions, and did an evaulation. The specialist told me that he felt my husband had a neurological problem, due to his slurred speech, confusion and slow reaction times.  He referred me to a neurologist.

I was able to get the appointment one week later (this was the second week of June, 2009, or so). The neurologist took one look at my husband and told me to take him immediately to the Emergency Room, because he was jaundiced - I had noticed that his urine was the color of Orange Dawn dishwashing liquid, but he attributed it to the fruit juices he was drinking - he had stopped eating, because he couldn't keep anything down.

He also was constantly thirsty, in constant agony, and had noticeable edema (swelling) of his ankles and feet.  He refused to be admitted that day (I'd driven him to St. Jude's in Fullerton, CA), but when a Home Health Nurse the pain specialist had visit him at home took one look at him, she got right in his face and told him he would die if he didn't go to the hospital - she called the ambulance, had him admitted to St. Jude's and not the local hospital - and he  was placed into intensive care.

I was then told by a liver specialist that he had a 50/50 chance; I later found out his Maddrey's Determinant was 69; I called my sister back East (she is a Critical Care Nurse), and she told me he was going to die, that his liver was fried.  

He was kept in ICU for three days - his heart rate was 130-150; his SpO2 was fluctuating; he was administered lactuluose and spirolactolone, intravenously, as well as several antibiotics.  The nurses did manage to get him to eat, somewhat, and he had a Foley catheter inserted (he did _not_ like that, one little bit!)

On the 21st, he was placed in an ICU Step-Down Unit, and they kept him there until 25 June - my sister the nurse told me to insist that they not send him back home, and I kept tellling the MSW's that I COULD NOT TAKE CARE OF HIM ANYMORE (I had done it for 2 years, and I was _exhausted_ (plus I was still working full time).  

I had requested a DNR (Do Not Resuscitate), which the liver specialist agreed to, and he also agreed to place him in hospice.

He arrived home on 25 June 2009 (the same day Michael Jackson died - I remark upon this, because the hospice had arranged for a hospital bed, supplies and an oxygen concentrator) - I had all of this set up in front of the television, and we both watched the Jackson debacle).

He was fairly lucid, that day, but he next day, he slept all day - I awakened him to meet the caregiver I'd hired for 4 hours, Mon-Fri, as I had to work.  I planned to work 5 AM- noon, then work from home (I am a database administrator (DBA)) the rest of the day.  

Saturday, 27 June 2009 - he stopped talking, kept looking at me, but not saying anything.  He also started "gurgling" - when I called the hospice nurse, she told me he was "end-stage', and just to keep him comfortable by administering the liquid hydrocodone she'd sent with thje syringe.  She told me not to bother giving him the _nine_ other medications the doctor had prescribed, but I did give him the Lasix, because he was swollen from the ascites.

He would cry out every time I tried to clean or change him - the nurse also told me that end-stage liver disease makes the skin very tender to the touch.  I couldn't quite turn him the way the caregiver and nurses could, so I did my best to clean him and make the bed.  

The nurse also told me to put him on the oxygen concentrator, which I figured out to get operational.  

On Monday, 29 June 2009, I walked the dog, put him in his kennel, cleaned the moisturizing chamber, gave him a dose of hydrocodone - I left at 5 AM, - the caregiver arrived at 9 AM.  

I called her at 9:05 AM - she said she was bathing him and changing the bed, and that he had cried out, but she got him to relax, and was getting him and the bed cleaned up.  

I arrived back home at 12:15 PM - he was breathing v-e-r-y s-l-o-w-l-y; his lips were chapped. I gave him some ice chips every so often, and put some Chapstick on his lips. As the caregiver was leaving at 1 PM, I was standing by his bed - she came over and said, "I think he's going; let's watch him for a bit".  

At 1;02 PM, he stopped breathing; she felt for the carotid pulse; at 1:03 PM, he took one last breath, and no more - she felt for a pulse - there was none. He changed a marble color, and that was it - he was dead.  She told me to call the hospice, and they took over from there (I had, just that morning, started calling funeral homes and cremation services, because something told me I should)

And that was how my husband died - thanks, all

[Gdaugther]

My dad was itching with small yellow bumps 5 years ago.He has been drinking for as long as I have lived.37 dads 65 the last 20 years hard drinking every single day beer and hard liquor.Funny how the nose bleads that would not stop (clotting not so good with a bad liver) Itching rash (bile expressed true the skin) I thought of different reasons but the obvious.Me and my sister has said he is trying to drink himself to death.But now it's real he visited last a month ago and this week had 13L paracentesis.
I do not know how long he has he continues to drink.
I feel that it's a planned suicide and I respect his wishes.
I also feel that the end stage must be horrendous for everyone and perhaps if your kidneys fail you can go quicker.
He is on a different continent so I can no just pop over and care for him
I also know he does not want to put me true that.
I asked how his ct scan results where and he said his Ascites was due to constipation..It's clear to me he does not want me to know he is dying.
I read up about it before he lied to me so I knew he had been constipated due to the Ascites taking much room in the abdomen and
liver not doing it's job.
Life expectancy is like 50% for two years that is if you do not drink.
If you have reoccurring Ascites 12 month's life expectancy.

I could not help but wonder that my dad knows all this and decided he does not want those last 2 years.

I could have admitted him to detox and alcoholic treatment 20 years ago only to what purpose.

I think never wanted to grow old and that was his reason for drinking.

I am happy he stayed alive to see my children be born and I will tell anyone that asks he drank himself to death because that is what he did

If they judge him or me because of it it's on them.

I love him I can not say that is fun to be around some one that got to drink themselves to a drunken stuper so they can go to sleep like they are in Jail.

[dpizz]

my suggestion would be to act on your instinct.  if you are reading any of the posted stories , you should acknowledge the pain that these family members are going through because their loved ones refused to seek help.  i am the 29 year old daughter of a woman who refuses to accept her alcoholic state.  her health and organs are (and have been) failing, and we as her children are beginning to prepare ourselves to deal with many of the mentioned consequences, including death.  i am looking into how to prepare a funeral, and this morning my sister was practicing things she could say at the viewing.  her body is frail, her belly is bloated, her face and eyes are deep shade of yellow...yet she continues to drink a liter of vodka per day.  her body is in such a detrimental state that most clinics will no longer accept her into their detoxification programs b/c they are not medically equipped to handle such a situation.  she is in her final stages and still refuses assistance.  she has lost everything.  i mean EVERYTHING.  what i write now is not even scratching the surface of reality.  there are not many words that can describe the severity of the matter.  
please do not continue to be selfish.  i am sure that you have friends and family who love you. if you will not get help for yourself, do it for those who love you.  please.  nobody should have to go through this.  help others to help you.

[jmcc1125]

My thoughts and prayers to you all as I have lost my beloved mother, age 49, February 28, 2009. Believe me when I say this that even though she suffered a horrible disease called Alcoholism, she was the most strongest, beautiful woman that when she came in a room of darkness the light shown upon her. She was diagnosed with cirhosis of the liver in 2007 but continued to drink. I was with her everyday in the last months of her life. On November 16 she stopped drinking because the GI specialist told us that in order to become a candidate for a transplant she needed to be free of poison for at least 6 months. In the last week of January she developed hematomas and ascites and was admitted into the hospital to get constant blood transfusions and clotting factors because her liver was no longer functioning properly.  3 weeks later she was tranported to Mayo Clinic for observation and testing...$75,000 later they told me that she would not be a candidate because she would not live through the surgery so she was sent back to the hospital where the doctors made a decision to put her on hospice. She was able to sign her own DNR and once at the hospice house she was no longer taking Lactolose so her amonia (ammonia) levels were spiking. Needless to say she died on the third morning. It was Saturday and she was in a coma when I arrived. My sister, and I made funeral arrangements with her husband and I walked in the room to check on her and my sister and my mother's husband were in there and I knew at that moment it was over. I looked at my mother as she was gasping for air making a gargling sound and I could see her pulse pounding through her neck and I told her that it was ok to leave us and that we are going to be ok and that was that. She took her last breath. As someone stated earlier it is almost still hard to believe that she is no longer with me. I was used to telling her everything about my life and now when something happens, I have the urge to call her still. It's a phantom pain that will never go away.

[dpizz]

Yesterday my siblings and I buried my mother.  She was 54.  She passed on Christmas day 2 hours after my sister and I had a private intervention (again) regarding my mothers alcoholism.  My sister and I tried one final time to discuss options for her to get help but, again, she refused.  We pointed out the obvious physical state of distress including the shade of her eyes which were just as yellow as the sun, her limp frail body, and protruding belly.  She ignored our cries and ignored the symptoms.  

Although it will be weeks before the final results of the autopsy is complete, currently her death certificate states the cause of death to be from cirrhosis of the liver.  The grim and gruesome facts, results, and process of the disease are so devastating that it is hard to breath.  Through her denial she must have been in such pain, and that is a hard pill to swallow.  

I must now move on and somehow muster the strength to find my way back to my desk and continue on with my life.  It seems surreal and no matter how much you think you may be prepared, the fact is...you're not.  Perhaps this will be the end of one chapter and the start of a new, for that I will hope.

[BereftDaughter]

Today my beloved mother died of end stage liver and kidney disease.  This is my guess.  The myriad of doctors and tests that she had over the last year did not amount to a definitive diagnosis.  At first we were told that she had kidney damage from cyclosporine, an immunosuppressant that she had been taking for her liver transplant (21 years ago, Sept. 13th 1988).  About a year ago she started to get ascites which felt like a horrible cosmic joke since she had survived so long with her transplanted liver (we had really thought it was "hers" by now).  She had every test imaginable.  Here are the various "guesses" made by the doctors:  kidney failure, ovarian cancer, enlarged spleen (but healthy gall bladder which had been removed around the time of her transplant), autoimmune hepatitis, chronic rejection, hepatorenal failure, portal hypotension, liver failure, healthy liver, inflamed liver, cirrhotic liver.  I could actually go on and on.  She had paracentesis done several times, but no one could say what was causing the ascites.  She was basically stable, but profoundly tired when she presented with terrible stomach pains.  It was determined that she had an unrelated strangulated hernia of the small intestines for which she needed emergency surgery.  The impact of the contrast used in the diagnostic ct scan and the anaesthesia caused her blood pressure to plummet post op so they did dialysis.  Her kidneys, although compromised, did bounce back.  She spent nearly a month in the hospital, and was told that she was fine to go home and to follow up later in the month.  Her condition debilitated and she lost the ability to support her weight.  She had to go back to the hospital.  They took 13 liters of ascites fluid out of her abdomen.  Again, they told us that she was basically okay, could go home and build her strength back.  Through all of this she was not jaundiced, the acsites fluid had been clear and her liver enzymes were good.  Because she would not eat, they put her on a feeding tube.  She started to pull away from us.  She did not want the light on, the curtains drawn, or to have any conversations.  She continued to live this way for three weeks.  The "liver team" was insistent that although she "showed signs of chronic rejection" she was okay.  They explicitly told us she was not facing "end of life" issues.  The last two weeks were horrible.  She grew more unresponsive and it was as though rigor mortis had set in:  she was really unable to use her muscles.  Despite the feeding tube, she became skeletal.  Her eyes became rheumy.  In the last week, she became unable to respond other than a grunt or moan.  Finally, the kidney team told us that the damage to her kidneys and liver was fatal and irreversible, especially in light of her wasted condition.  At this point, all I wanted was for her to be out of pain.  As she had made me her health care proxy, I asked for her to be given a morphine drip.  I was given a hard time, the hospital said they had "lost" the health-care proxy (the hospital was and hour and half away from my home), and they called my father to see if he was "on board" with her being put on the morphine.  He concurred and I signed new paperwork for DNI, DNR. Two days later, despite all of the paperwork and the direct orders from my father, they took her off the morphine because it was affecting her respiratory condition.  It took a while to get them to give it to her again.  Their version of hospice was the "palliative team," who did step in to offer assistance.  Her last night she could not talk, her eyes remained open, she grunted/moaned. Her skin was so papery thin that it tore just from her moving in the bed.  She was so dehydrated that it seemed her tongue had shrunk inside her mouth.  Her mouth was fixed in an open position.  She suffered terribly and I can only ask, "why did she fight so hard for so long?"  She died a horrible and painful death even though for 21 years she had been a model patient and as knowledgeable about her body as any doctor.  She was loved and loving and her doctors let her down.  I came upon this site in an effort to make sense of things which are just senseless.  

[suez21569]

Does HE in cirrhosis ever go away?  Can you stop taking the lactulose once the symptoms stop or is it something that has to be taken forever?

[YoungerSister]

I will be brief because forming words today is hard.
My 50 year old brother has drunk since he was a teen.  He has been to detox and rehab at least 5 times.  Last week he went to detox and the doctor looked him squarely in the eyes and said, "If you take another drink you will die."  His liver and pancreas are failing.

My sister in law (they are actually divorced but she enables him by letting him stay with her and 2 teen daughters) said that he bought a 30-pack of beer.  When I asked how many beers he drinks a day, she said practically the whole 30 pack.

I live 12 hours from them.
I agonize for my 2 teen nieces who are agonizing on networking sites about him.
I came to this site, wondering if my brother has hours, days or weeks to live.  I called his house a bit ago, got the voicemail and said, "I know we haven't talked in a while but my message is short:  I do not want you to die.  Love, _____"

Thank you all for posting all these years.  I will update.  I haven't seen him in over a year, so I can't advise what he looks like physically.  He has a runner's build, so those 30 beers are probably doing so much damage.  

[sadderthansad]

It is one in the morning, and I find myself reading all these posts, and crying so much, the words are blurred. But I'm trying to read on. I was hoping I would find something to help my family through our ordeal with our Mother , who is 85 years old, and in the hospital with final stage liver disease. My mom has heart failure, and has lived with it for at least 10 years. because her heart wasn't pumping the fluids through her body as it should, fluid built up in her abdomen area, and she had to have it drained once a month, usually 3- 3 1/2 litres. Kidneys did not work up to par, and her liver was not perfect, but she was ok.

One month ago, she went through the procedure of removing the fluid, but this time the fluid was not clear, it was red. They kept her for a few hours, because her blood pressure had dropped, but once stable, she was sent home.
That evening at dinner, my dad noticed that her head just dropped, and she couldn't get the cup in her hand to the table. She was rushed into emergency, where her blood pressure was 60 over 19. The doctor suggested that my dad call all the family, as she may not live through the night.

3 days in ICU, they were able to stop the internal bleeding, and she was moved to a regular room. Mom has been in the hospital now for 5 weeks, but we are struggling through every day. For the first week or two, we had no doubt that she could recover, and go back to her somewhat normal life at home, taking care of herself, cooking, groceries, and 1 or 2 nights a week out for dinner with my dad, and their friends.
Now, she is bedridden, frail, can hardly eat without throwing up, wears a diaper and has diarrhea all day long.
We are preparing to say good bye, but am horrified, and terrified after reading these posts, as to what is to come.
Spitting up blood, and clots, trouble breathing, gasping for air?????

How will I tell my family this, especially my dad, who arrives every day with such hope, and Eskimo kisses her, and acts like a clown, trying to get a laugh out of her. 60 years of marriage, and he feels that he was robbed of a couple of years of her life, because he thinks the doctor did something to cause her to bleed.

SO, I have a few questions that I'm hoping a medical person can help me with.

1. Since we have not been given any explanation as to why there was blood in the last draining, we have concluded that the doctor hit an artery or something like that. Is that possible????????
I've noticed that on 2 of these posts, there was talk about internal bleeding with final stage liver disease.

2. Is there ANYTHING we can do to make this easier on my MOM, and the family. Please tell me there is something
I want to remember my Mom as that beautiful person she is, not with an image of what we are possibly about to go through, I don't want to leave her side either.

I can't even believe that I am typing these words, that I am about to loose my Mom..................
Any input, from anyone qualified, would be greatly appreciated

Sadder than sad

[BereftDaughter]

I cannot offer you any medical advice.  My mother died on January 8th at 71.  One of the things that I wish we had known was that she was actually dying.  The liver team at her hospital kept saying that she was ok and that all that was really wrong was that she needed "zest."  Three days after this was repeated, in front of her, the kidney team said that she was dying and that what was wrong with her was irreversible and terminal.  She died within the week.  All I keep thinking is that if I had known that she was dying, I wouldn't have kept nagging her to eat, to "will herself" to get better.  I would have been more respectful of her transition.  She suffered terribly in the end.  I'm sorry to have to tell you that.  But once we came to terms that she was not going to get better and return to her old life, we made sure that she had sufficient pain management and we told her that we would be okay without her.  I lied through my tears.  I think she was holding on longer than she needed to because she was so fearful of how I would react and cope with her loss.  A true mother to the end.  It has been two months now and it is actually getting harder to cope.  I miss her desperately and look for her everywhere.  I only say this so that you know that I truly feel for you and saw myself in your words.  Be kind to yourself, to your kind and loving dad, and at some point, allow your mother whatever she needs to die peacefully.

[Pandora97]

To Everyone,

I wish this group had been here when my mother was dying, I feel for you all.

I wrote about my experience with my mother toward the end stages of her alcoholism, because I could not find anything like this on the net and I didn't want anyone else to feel so alone.

[nofightleft]

Thank you to all that have posted before me, reading your posts has me sitting here in tears but with a mix of hope and sadness.
I am a 33 yoa female single child with 2 terminal parents. Dad was diagnosed with terminal colon cancer in Aug 06 and is still with us, it has metastasized all through the bowel, liver, & kidneys. He was diagnosed with Parkinson's in '08 as well. Now it appears he is going into full liver failure due to the cancer. It has taken over the liver and blocked the ducts off even with 3 stints. He is one of those proud strong men who has never shown any emotion. He has a Dr's appt. in 2 days and we are all pretty sure that is when they are going to tell him there is nothing that can be done except hospice and pain management. While I have known its been coming it has not been any easier. Add to that he has chosen me to be his verbal punching bag, and has made clear he wants nothing to do with me or any of it. He told our family its all my fault and that I scream and yell at the Dr's to get answers then leave the mess for him to clean up. (Story behind that: in Aug 06 1 he was in the hospital for 5 days before they knew why he was in there. It took us 5 hours to get a Dr to come to his room, look at his chart and then they realized he had stage 4 cancer. Dr thought he was just there for dehydration.) They started him on TPN and chemo and he's lasted an additional 3.5 years till this point where liver is failing).
How do you live with or forgive the guilt of not being there for a dying parent when they have been horrible, mean, degrading and hateful to you? I have taken myself out of the situation as he told me too after i took him to his last oncology appt. 4 weeks ago at his request, but that has led to a second issue-I am power of attorney for both parents and he is blocking me from dealing with my mom too. She is in home hospice for terminal lung failure (COPD/ Emphysema from 46+ years of smoking & w/ depression and anxiety added to the mix).
I am so torn at how to just move on knowing its coming down to most likely the final weeks of his life, how to deal yet avoid him and manage my moms care. Hospice has not been very helpful in my eyes as they turned over her medication and care to my dad.
I guess after 4 years of the 2 of them terminal and not a lot of family help (uncle has terminal bladder cancer) I just don't have any more left in me to fight them all to do what's best for my parents.

Anyone that has been thru this or anything like it...thoughts?

[vmginny]

My husband was diagnosed with cyrptogenic cirrhosis of the liver w/ascites on August 8th, 2007.  The doctor said he had about three years to live and wouldn't make it to our son's high school graduation.  He's 61 and I'm 55 but we have a 17 year old still at home and 3 adult children who live in the same city as us.  Since then my husband has lived as he would have lived if not given the diagnosis.  This last year he has been slowly getting sicker and sicker with swollen ankles and legs, bruising easily, skin and eyes jaundiced, skin itching.  He has had infections that take forever to clear up but he refused to see the doctor preferring to suffer through them and heal on his own.  His platelet count is very low with it running about 60,000 and normal is 150,000 to 400,000.  When he had a colonoscopy he had to have platelets given to him.  When he had a skin cancer removed he had to be hospitalized for the simple incision to remove the skin cancer.

This last year he would only make it from the bed to the living room couch and then he would fall asleep while watching T.V.  He took Ibuprofen like candy because he had stomach aches and back pain.  And then five weeks ago he became bedridden because of the back pain being so bad.  Last week he had paracentesis to drain the fluid off his abdomen and they removed 10.8 liters of fluid that was very yellow.  He feels a little better but is still bedridden.  If he gets up and goes to the living room couch he has dry heaves because of nausea.

Unfortunately, his main care doctor retired in December and we couldn't get him into another doctor until March 30th, 2010.  We have been waiting for 3 weeks and will see the doctor next week.  We did get him in to see the physician assistant and that's why he's had the paracentesis.  He scheduled that and we got my husband a narcotic to relieve the pain.  The physician assistant said it may be my husband is at the 6 month stage of his cirrhosis making him ready for hospice.

Unfortunately again, our insurance will only pay for one month of hospice or 25 home health visits.  And though we have a tough time making it on my husband's pension we make too much for Medicaid to help out with medical costs.  I've applied for him to have social security disability so we can get Medicare but they said he would have to wait 2 years before that becomes effective.

I don't mind caring for my husband.  I do get anxious because I'm bipolar and get anxiety attacks but I love him and will do my best to care for him.  I wish we could get a hospital bed for him because right now he can't sit but for a very very brief time and isn't able to walk unassisted and is bedridden laying on his right side and eating laying down.

[orphanannie26]

my mother was diagnosed with hep c/cirrhosis 4years ago. she was 52. they believe she contracted hep c vis blood transfusion in the 70's. She found out she had hepc because she felt funny. So they ran numerous tests. By the time they found out she had hepc, cirrhosis began. she is currently in the final stages. she has been in the final stages the past year. interferon almost killed her. Her body couldnt handle it.  the past year she has had fluid build up, confusion due to fluid build up, huge belly from the fluid, sleeps alot, days & nights are flip flopped. Recently, shes emaciated, no balance, uses a walker, gets "tapped" (fluid removed every other week), water on brain (is taking meds for this), and is taking meds for removal of ammonia (laxative?) her kidneys are currently affected. Thats what I know. Shes home. In bed. she has one day a week where she feels ok to shower. Then she goes back to bed. this "lingering" state has been going on for months. doctors say she should have been dead a year ago.  My question is "how long will this last for?"  Any thoughts are truly appreciated....................................

[orphanannie26]

In addition, my mother continues to have the "flare ups" of hep c during her final stages. The symptoms (in addition to whats listed above) are sores, itchy skin (from toxins) hair loss, fever (sometimes infection) and flu like symptoms. oh,, her body does produce any white blood cells or red blood cells (she takes meds for that as well) she also has no immunity. she cannot be around grandchildren. not sure if i was clear or not my moms cirrhosis is caused by the hep c which are the last stages.

i understand she'll eventually go into a coma but has anyone else had a similar experience??????? Its so difficult to have her linger. I cant mourn I cant heal. I cannot move on. Its torture watching my mother suffer. Its been a year. a continuous nightmare.

[Mike1962c]

Two weeks ago I lost my dear sister to cirrhosis of the liver. She was a very successful business woman in Atlanta with a promising future ahead. She was only 46. Two years ago she went through a divorce and had met the man of her dreams and was engaged to be married next month. She had her dressed picked out and all the plans made, but the end stage of cirrhosis took her away.  I think most of the family is denying that she was an alcoholic, but I truly think she was and kept it hid for years.  When visiting her I found lipstick around the tops of liquior bottles in the cabinet.  I even noticed small liquior bottles in her purse on occasion. Right after her divorce I noticed that the whites of her eyes were yellow but never mentioned it to anyone.  From that point on her symptoms  started to surface. She was having digestive problems and she was get things confused from time to time. She even started calling me on the phone early in the morning and I could never get her to answer later in the day.  Her sleep patterns were getting reversed.  She was going to her Dr. appointments would never let her fiancee go into the room with her.  Months before her death she started to skip her Dr. appointments.  Three weeks before she died she was found unconscience and rushed to the hospital.  She stayed that way for five days and woke up.  She was then sent to Emory in Atlanta and evaluated for a liver transplant, but her body to was weak to survive such a surgery if by some miracle she would have been approved. During her week at Emory she drifted in and out.  She had her lucid moments and spoke and even joked with her family.  On the last day before she was moved to hospice she stopped eating or drinking. I knew she was going to leave us soon.  After being moved to hospice she died within 12 hours.  She did tell us she was scared, but we told her the angels were going to be with her.  She died with her daughter by her side and her family missed her so much.

[gnw54]

My wife is currently going through liver failure and the end is very near. She is currently in Hospice and is unable to eat this being her third week without food. The doctors say she will soon go to sleep and be unable to awaken due to the toxins building in her body. Her eyes are jaundice as is her skin. She drinks water but nothing else. Cirrhosis has taken her health and vitality over the last two years. Her desease is due to Hep-C and alcoholism. She has tried many times to stop using alcohol but always began drinking again. The alcohol has taken her dignity and now is taking her life. When she was diagnosed with cirrhosis she initially was hospitalized because of alcoholic hep. This was gut wrenching to watch but she recovered and was given a second lease on life. She was given several medications which she would need the rest of her life and she was diabetic using insuline. Once she recovered from the Hep she was determined to not drink but each time would return and she was hospitalized numerous times over the last two years.
This desease robbed her of her unbounding eneregy beautiful smile and it is hard to look at her suffering through this process. She is able to awaken long enough to try to talk but will fall asleep in the middle of her sentances. This desease turns night into day and reduces your energy levels significantly. For the last 6 months she could only walk 30 feet without resting. Fatigue is really the only symptom that the liver is having serious trouble until it becomes very obvious that a person is seriously ill.
Once someone is diagnosed with a liver related disorder one has to abstain from alcohol for a year before they can even be considered for a life saving transplant.
Two weeks ago I was told my wife was not eligible for a transplant and she should be placed at Hospice but I was determined to help her fight for her life but this fight was one that was not to be won. Yesterday I asked the priest to give my beautiful wife the sacrament of the sick and the family was present to pray with her as she prayed from her bed with her children holding her hands. I am getting ready to return to hospice in a few minutes so I will stop my rambeling. The nature of alcoholism is relapse and she has been ravaged by both deseases. In spite of the nature of these deseases she loved life and it will soon end.

[jst4shanell]

I lost my father 2 weeks ago.  He has had cirrosis (cirrhosis) of the liver of 10 years at least?  They told him he would not live another month more times than I can count.  I have gotten the call from the doctors over 5 times asking me what my wishes were because he was not going to make it.  I have sat there waiting for him to go and the opposite happen so many times it almost makes me sick.  His body and mind was so stong it amazes to this day.  The last 2 months of his life were the worst.  He went through the last stages but it's not what he dies from.  He went to the hospital for of course the ammonia toxicity but he had OCPD.  They didn't give him much of a chance but of course he pulled through.  He was no longer eating.  But he hadn't eaten for 3 months.  He went from 220 to 140.  He was at a residential facility and my grandmother can and found him in a seizure  like state.  They just said he needed rest and wouldnt take him to the hospital.  Finally they decided to approve him to get a feeding tube.  Once he was there, he was too sick for any of that.  He could no longer breathe by himself.  His liver wasn't functioning properly of course.  They found holes in his stomach and intestines which caused Septic shock.  He have acute renal failure, then lung failure, then liver failure, then total organ failure.  My grandmother refused to believe that he was dead and kept him on a ventelator or the duration of his life.  I could do nothing to stop it.  He lasted a week and in that time I saw his body transform into something a dead body should have.  It was horribly tramatic.  My father was 52 years old.  In our family we are known to live into out 100's.  Heroin and alcohol killed my father and my relationship with my father.  I wake up every morning wishing I had my dad back, good or bad.  I'm a 30 year old woman that feels like a little child again.  What have I done to deserse to feel this way?  I am in so much pain it's hard to breathe sometimes.  I lost my step father at the age of 14 from alcoholism and drugs.  Why me?  Is this some kind of sick test?  My brother died when I was 17 of drugs.  

My father was selfish, self absorbent, unreliable, irratating, immanture, disrespectful  and I love him all the same.  I hated the things he did and harbored a lot of resentment towards him but he was still my father and I always had hope.  I never gave that up.  When my father died, all that hope vanished.  All my dreams and aspirations for him vanished.  I will never have a dad again.  He's gone.  All my hopes of posibilities are gone.  I would rather have horrible heartache and dissapointment, than know that I will never have any of that ever again.  It's gone.  Done,  It's a done deal.  My hopes and dreams are gone.

[gnw54]

Well I just posted a comment but here is the update. My beautiful wife died Friday night of Liver failure. At the age of 54 she died and now I am here just feeling so empty. She was my mate, friend, lover and now she is gone. It is extremely hard to deal with the void I feel losing her. We had a great life together because we did everything with each other. I have just returned from the funeral home and it is painful preparing to bury her knowing That is the last time in this life I will ever see her.
We were fortunate to have been able to be present when she died as each family member was able to say what they wanted as she died. The memory of her death looking at me with tears in her eyes as she faught to live is so hard but she left knowing everyone in the room loved her dearly. The grief of losing her is so very overwhelming aat this moment as everywhere I look there is a memory of our short life together. If your loved one has chirrosis (cirrhosis) my thought is that you need to treasure each day as if it was their  last.

[pigginlovely]

im back again , my brother has gone into hospital for detox and getting fixed up again he bled quite badly last night and the nurses cleaned him up, he has to have another scan tomorrow and his visits to the consultant are every two weeks now, to everyone this is the hardest thing ive had to go through in my life it all feels like everything is on hold, yes hes been a bad boy and not a very nice person to be around at times and i must admitt i moved 300 miles away to get away from him but i would give the world to be there now and share more GOOD memories, we made our peace in november last year, and i texed him today saying it will be ok and i love him, but sadly i dont think it will be ok and part of me wants to run to him but with children grandchildren and everyday life i cant just drop everything so why do i feel guilty! Its so hard, cirrohsis, varices, bleeding portal hypertension, weight loss confusion,vomitting, and now hes getting help again to go back out and drink again when he feels better, does he know we love him i doubt it! this is such a horrible disease and the frustation of it all leaves you feeling desolate just need someone to talk to who is going through the same please :(    

[bigj40]

Im 18 years old cirrhosis of the liver is the worst thing.  I burried my mom last year due to this disease.  It is a emotional roller coster.  she survived it for 10 years.  The last five years she got really sick lost most of her weight she ended up weighing 78 pounds.  Me being 14 at the time didnt know what was going on until i was 17. Found out that my mom was dying.  The last 3 months of her life she sat in the hospital unable to move.  Unded up her live had a hole in it seeping fluids into her adonmal cavity making her mend a infection that was uncurable.  PLZ this is to everyone who has someone spend the time with the loved one that has this disease and the only thing you can do with them is spend time.  My mom who i loved very much and i was a mommas boy. She doesnt get to see me finish my senior year of football,bowling, and graduate.  That was the hardest thing to do is bury my own mother at age 17.  Something i would never think of doing.  Thanksyou

[tammy0854]

I have a brother that is 60 he is in a hospital in Arizona, he spent over a wee in ICU, just recently moved him to a room.After speaking with the nurse she informed me because of condition of his liver he will not be able to take care of himself has to go into a nursing home.I received the info over the phone beacuse i live across country, i wondered why when i speak to him i can hardly understand him, he also sounds very tired and confused, what can i expect here on out, very hard when you cannot see a family member in person especially while thay are so ill.

[BereftDaughter]

I wanted to tell you to keep on.  I know that your mother would want you to graduate, and have a good life.  I believe, from the bottom of my heart that your mother IS seeing you finish your senior year.  She is watching every move you make.  So make her proud.  Burying your mom at 17 is, indeed, the hardest thing you will ever do.  I'm sorry that you had to feel such pain and loss at such a young age.  You sound like a loving and sensitive boy.  You have so much ahead of you.  Good luck.

[jhodges]

Hello, I have read many of these sad stories and i need some help.  My boyfriend is 22 years old.  He was diagnosed with cirrhosis of the liver at age 19.  At age 21 he had a liver transplant.  Now a year later he is slowly dying from liver failure.  The doctors say that it could be any day now.  Maybe 3 weeks to a month.  He has the jaundice.  His eyes are real yellow.  He is weak and laying in the comfort care unit at the hospital.  The doctors say that he cannot get back on the transplant list.  I really dont even understand why.  He is sleeping a lot.  But when he wakes he he talks some.  He has a very little appitite do to them giving him fluid.  He did not get the disease from drinking, but from playing football.  He is so young and I need some direction.  I really just need an understanding of why cant he get another liver transplant and is there truly nothing else the doctors can do.  Do i need to get a second opiopn of what.  I know a lot of the stories stated that the final couple of days the person could not urinate and throw up blood, but does not show those signs.  Somebody please help me and give me some direction.  I am pregnant now and my dure date it is 14 days, I really want him to be able to see our child.

[miserable_in_georgia57]

I know exactly how it feels.  After 2 failed marriages, I finally meet the man of my dreams.  He is the first man I have known that didn't drink nor was violent.  
He wasn't a real good person about going to the doctor.  He would when he needed to, go to the VA in Lake City, FL.  When we got married, I put him on my insurance and told him I really wasn't all that cracked up about the professionalism of the doctors at the Lake City or Gainesville, FL VA.  The Lake City VA had some test results that came back abnormal and told my husband, that he had cirrohsis of the liver, and wanted him to go to Gainesville to get a biopsy done.  He did, first they sent him a letter that he had Hep C, and yes, he did have cirrohsis of the liver, but that he shouldn't have no problems for at least 10 yrs down the road.  They just told him to stop drinking if he was, which he'd gone to rehab for that and a drug addiction over 20 yrs ago.  

This man had already gone through 1 life altering experience in '85, when he was on a motorcycle going to work and a semi tractor-trailer clipped him, just outside of Tifton, GA on I-75.  He eventuallly lost his Right leg just above the knee and the use of his R arm.  He was the father of 2 small boys, the youngest still in diapers, when his then wife
informed him that she just couldn't live the rest of her life with "half" a man and left him with the 2 boys.  They believe it was the 13 pints of blood he got in 85 is where he got the Hep C from, since they didn't start screening for it until 92.

On July of 2008, we decided we would take a getaway weekend and go to Fernandina Beach,FL and spend some private time, even though he's in a wheelchair, he still enjoys going and watching the sunset at the beach.  I had gone to the DQ since he wanted chili dogs for super and I ate a burger, later that night he got deathly ill, I wanted to take him to the ER, but he said he'd be better by morning, which he didn't, he deteriorated to the point of having blood run from both ends, I called EMS and they had to vent him to help him to breathe, they transported him to the bigger hospital in Jacksonville,FL.  There he had a team of 5 doctors, when he arrived, he couldn't even speak, nor was responsive.  First they told me he had ecoli. and then the specialists came in and talked to me, they said his liver was deteriorated bad and he needed blood transfusions.  His blood level had dropped severely.  They kept him in a sedated coma, using the same stuff that killed Michael Jackson.  He spent a month there and they said he would need to see a good GI doctor, locally if possible.  His regular GI doctor sent him to Shands for a transplant evaluation and they gave him a MELD score of 11, think it's up to 12 now.  They done a TIPS procedure on him too that usually works in 95% of the patients, but unfortunately, my husband fell into that 5% that it didn't help.  They even went back and revised it to clear it and it didn't help.  He's had dozens of EDGs/ argon to seal bleeding varices, and had the ones in his throat banded.  His regular dr's partner, when on call, tells me he doens't understand why my husband is still alive, because usually, in most cases, when the bleeding starts, they usually only have a life span of 9 to 15 months.  My husband is closing in on having 300 pts of blood transfused.  

At times, he'll go through periods of hepatic encephalopathy, which they'll up his usual dose of 30ml 4x daily to 45 ml 4x daily and added rifaximin, A lot of his other levels will get off too, like his sodium will bottom out as well as his potassium.  He takes 3 kinds of diretics and zinc to help with blood, he used to take sandistatin by IV every 4 weeks, but that didn't stop his bleeding.

His last stay in the hospital lasted 3 weeks, and he was put into ICU twice because of seizures and having to be resuscitated.  His regular dr has informed him, that there's nothing else he can do for him, that because of other health issues, and being weak, that he's not a candidate for transplantation, and that basically this was how his quality of life was going to be, and that if at any time he decided, enough was enough, that he could refuse any further blood transfusions and he would then bleed out and die.

As a spouse, it's rough to watch your husband die slowly and painfully, there are times when you wish he'd go peacefully in his sleep, but yet, not, because some miracle could happen.

Who knows what a person would do if they were in the same position, as to whether we'd choose to end our own life or not.

Meanwhile, we've got dr and hospital bills piling up through the roof and his SSD doesn't go very far and I've been laid off for well over a year, but I doubt I can hold a full time job when there are times he can't be left alone and his family themselves aren't much help.  They're all just waiting for him to go, because of his settlement from the accident, but that only pays every 5 yrs.

I feel for any and all who are dealing with someone with any kind of chronic illness, but mostly end-stage liver disease.

[Kimmydee2]

Thanks so much for all the posts to read in my beloved uncles last hours with us.  My uncle has been a severe alcoholic since his teen years.  He is now 53 and in end stage liver failure.  In 1995 he suffered a bout with bladder cancer, they patched him up and he has lived cancer free, but they discovered then or shortly after that he had cirrhosis.  He never stopped drinking, I think he may have even started drinking more at that point.  His belly became swollen and he had horrible mood swings over the last 15 years.  Most of the time he would just stay in his room, not eat and drink all day.  Its surprising that I believe the end stage was prolonged and dragged out in the fact that he had sleep reversal for years, like 3-4 years.  He also went through a few different times of encephalopathy where he would pick at things that werent there, talk about things he thought were going on but didn't exist and babble incoherently......He bounced back from these things many times over the last 3-4 years.  This last episode, he just woke up screaming in pain in the middle of the night and my mom had to call 911 and he was flailing and screaming with pain in his abdomen.  They found he had random severe peritonitis.  He has been being drained since last December routinely and getting blood.  He has been on dialysis for hepatorenalfailure for the last year.  Reading all the posts here, I am lucky for him to still be here after a whole year in the end stages.  but I have reached the point for my mothers sake, that I hope this is it.  No more suffering and she is having a hard time watching her baby brother die.  Two days ago he started sleeping alot, is refusing food and medications.  He awakens intermittently, starts to do something, but falls back asleep before accomplishing any task.  He has now stopped taking in fluids and has not been out of bed for a day or gone to the bathroom.  My mom has taken the rest of the week off work to sit with him and I am considering making the four hour drive home for support.  It is sounding like the beginning of the end.  I was so happy a few years ago to take my uncle to his first and only elton John concert.  When he was a teenager I remember my grama driving him to the arena and tickets being sold out and my uncle crying over it.....he loved Elton John.  So, I grew up and make good money so I bought tickets and took him.  He sang and cried the whole time.....It was beautiful....That is what I have, memories......I am 41 so he is more like my big brother than my uncle.......Just waiting on a phone call from mom, if he is still unresponsive.....I will be making the drive to L.A........thanks to all of you for a very supportive and understanding site.....Kimmy

[knowlingly]

My brother was diagnosed two years ago when the pressure in his abdominal area was so great he ruptured.  Afterward he refused to accept it was liver disease.  He refused to eat and take his meds correctly.  He insisted on eating at a fast food resturant for breakfast daily.  Family members would give in and take him.  He moved in with us and allowed me to help him some.  His hemaglobin levels would drop to around 4 and he would sleep days and walk around at night.  By going in for blood transfusions and having the fluid drawn off his ab every four to six weeks he was able to last a little longer.  Soon his kidneys started giving him problems and he developed diabities and required insulin.   About two months ago the doctor stopped the transfusions and referred him to hospice.  They at once told him he could eat anything he wanted.  It upset him.  He started taking his meds and trying to eat better and thus felt better.  I kept telling him that the better care he took of himself the longer he would last.  
One day he decided to take off and move to another area and try to find a way to get a hospital to give him the blood transfusions that he thought would extend his life AND allow him to eat what he wanted.  His move to another area delayed his meds because he forgot to take them.  His daughter who came and got him to move in with her did not remind him to take them because she said "he knows what he was doing".  He was not taking his meds and she was letting him drive around in her car even though he was confused.  The doctors he saw refused to admit him for transfusions.  His lapse in taking the lactulose caused more dementia and eating of wrong foods.  Day before yesterday I got a call that he had forgotten to dress.  He was confused about where to go to the toliet and was using the corner of his room.  He became hungry and sat down and ate a napkin.  
Now hospice has him on morphine drops every hour because he cannot rest.  They have stopped all other meds.  You can look in his eyes and you know he is not there.
I can tell you that it was about a year after he was diagnosed with end stage liver disease that he was diagnosed with liver failure.  After that it was 8 months of getting the blood transfusions frequently until his doctor said no more.  His disease progressed in this manner because of not taking the medicines that keep the toxins out of the blood stream.  
It is not easy to help someone who denies the disease nor is is possible to make choices for them.  
I am angry with him because he would not try.  I know had he made better food choices and taken his meds we would still have a few years together.  
The length of time one has with this horrible disease depends on how early it is caught and compliance with diet and meds.  
Nobody can name a date or even a month for the end, but how you care for yourself and your loved one makes a differnce.  

[knowlingly]

My brother was diagnosed two years ago when the pressure in his abdominal area was so great he ruptured.  Afterward he refused to accept it was liver disease.  He refused to eat and take his meds correctly.  He insisted on eating at a fast food resturant for breakfast daily.  Family members would give in and take him.  He moved in with us and allowed me to help him some.  His hemaglobin levels would drop to around 4 and he would sleep days and walk around at night.  By going in for blood transfusions and having the fluid drawn off his ab every four to six weeks he was able to last a little longer.  Soon his kidneys started giving him problems and he developed diabities and required insulin.   About two months ago the doctor stopped the transfusions and referred him to hospice.  They at once told him he could eat anything he wanted.  It upset him.  He started taking his meds and trying to eat better and thus felt better.  I kept telling him that the better care he took of himself the longer he would last.  
One day he decided to take off and move to another area and try to find a way to get a hospital to give him the blood transfusions that he thought would extend his life AND allow him to eat what he wanted.  His move to another area delayed his meds because he forgot to take them.  His daughter who came and got him to move in with her did not remind him to take them because she said "he knows what he was doing".  He was not taking his meds and she was letting him drive around in her car even though he was confused.  The doctors he saw refused to admit him for transfusions.  His lapse in taking the lactulose caused more dementia and eating of wrong foods.  Day before yesterday I got a call that he had forgotten to dress.  He was confused about where to go to the toliet and was using the corner of his room.  He became hungry and sat down and ate a napkin.  
Now hospice has him on morphine drops every hour because he cannot rest.  They have stopped all other meds.  You can look in his eyes and you know he is not there.
I can tell you that it was about a year after he was diagnosed with end stage liver disease that he was diagnosed with liver failure.  After that it was 8 months of getting the blood transfusions frequently until his doctor said no more.  His disease progressed in this manner because of not taking the medicines that keep the toxins out of the blood stream.  
It is not easy to help someone who denies the disease nor is is possible to make choices for them.  
I am angry with him because he would not try.  I know had he made better food choices and taken his meds we would still have a few years together.  
The length of time one has with this horrible disease depends on how early it is caught and compliance with diet and meds.  
Nobody can name a date or even a month for the end, but how you care for yourself and your loved one makes a differnce.  

[BereftDaughter]

In time your anger will get better and you will be able to see that we have to allow our loved ones to die the way they choose.  I, too, was very upset with my mother who I felt had "given up."  I really don't think that they give up.  I think that their battle with their disease just becomes too much for them and they see dwindling benefits for all their hard work.  No one was better than my mother for taking her medicine, keeping track of her bloodwork and being her own advocate.  But it was hard work and I think she reached the point where it was not worth it for her if she was going to die anyway.  Of course I was upset and hurt and angry, because I felt she gave up.  But now I see that I had to allow her to live and die on her own terms, as hard and as painful as that can be. I hope, in time, that you can learn to live with that, too.

[lesabeast]

Sitting here this morning I reflected back on last week when I was sitting here searching for answers to what cirrhosis would be like at the very end. I know now there are no definitive answers but I also was so grateful for forums like these that gave me an idea of what to look for. And now I share my, somewhat short, story.
On the 8th June, after my Mum had been in hosptial for 3 weeks with vomiting and diarrhea and fatigue, her Dr rang me. He told me that they had missed it completely in the 3 months that she had been sick but that today they had run tests that revealed cirrhosis of the liver. He explained the severity of cirrhosis but told me to google it and then the next day to ask questions. I did. I was told that she would live about another 10 months. I was told that most of her symptoms were in the moderate range, some moving towards severe. I went and met with him by Mum's hospital bed that Friday and we made plans that a week later I should be able to take her home. She would still have to go and have regular tests but we planned she would come and spend time in the country with me and my family. Her belly had been huge the week before but with the diuretics had gone down 7 kgs.
The following Friday I went to see her to see if she was ready to be discharged. I had spoken each day with her on the phone (I live 2 hours from her) and she seemed to be doing okay, just tired. That Friday she did not look good at all. She was very yellow and drowsy but we had great conversations. I went again to see her on Sunday with my 4 children and she was much brighter, looked better and we spoke about her coming home on the Monday.
Monday was bad. I arrived at the hospital at 9am. Mum was not in her bed but her bed had diarrhea on the sheets and floor and some blood on the foor as well. The nurses call light was on. I called out to Mum who was in the bathroom. She was very confused and thought I was the nurse. When I opened the door she was naked on the toilet in a big mess. I pressed the call button again. Mum asked me if I was ready to weigh her. She was so confused but then realised who I was and was embarrassed and asked me to let the nurses help her.
I went and stripped the bed and cleaned the floor. I got clean sheets and blankets and remade her bed and tidied the room. All this time she was still sitting in her mess on the toilet. It was too much. I tried to get a nurse form the station to come help but she said everyone was busy. I went back and showered my dear Mum and dressed her. As I went to put her back into bed, a nurse appeared and weighed her and then left.
All day I sat with Mum who was confused and in and out of sleep. At 5:30 when her Dr came to do rounds I spoke to him outside the room and explained that noone had been near Mum all day. He told me she was on a busy medical ward and they had no time for her. I asked for him to transfer her to palliative care. We discussed her messing the bed and her inability to get to the bathroom herself. He said she would never returnt o her home.
On Tuesday at 6:30am my mum called me. She was coherent again but upset because she said I needed to come in and say goodbye as she was going to die that day. When I got to the hospital she cried because they had put her in nappies. I explained that if she felt strong enough that she could still get up and take herself to the toilet and that she was being moved to a new place where she would have one on one care. We talked for a while and she was more relaxed and happy. That afternoon she was moved to an amazing place with 10 rooms, 1 patient per room and awesome nurses. I fixed up her room nicely and got her comfortable. That was last Tuesday. That was the last time my Mum was really with me.
On Thursday she slept all day and would only wake up and smile when people came in and out. There was nothing conversation wise. I stayed the night in the chair next to her. On Friday morning she awoke and said she was thirsty. I gave her water but she asked for lemonade. She drank nearly 250mls and then went back to sleep. That was her last fluids. On Saturday there was more sleeping but her stomach swelled massively and she became uncomfortable, groaning when she was moved. They began the morphine. Saturday night when I tired to sleep next to her there was an awful smell coming from her - ketonic and ammonia mix. I actually got so nauseous and dizzy from the smell that I vomited and had to open the outside door (despite in being freezing outside). This continued to get worse through Sunday.
Monday this week she lapsed into a very deep sleep. She could not be roused for more than a groan. She was put on morphine and medazaline pump. There was a horrible rasping and gurgling in the morning and then thick white mucus came from her nostril and mouth. The nurses cam and suctioned several times during the day. The rasping improved and she breathed normally again and was peaceful.
At 6:10 that evening I was watching TV and I heard her swallow. I switched the TV off and watched her. She was breathign very slowly but swallowing as well which was new. She then stopped breathing altogether. I sent my husband to get the nurse. When they came back, she breathed again. I sat next to her and held her hand and kissed her. She did not breathe again.
I believe she gave up quickly as she was so scared of losing her dignity. Her suffering was so very brief.
I hope that this helps some people with something. We had 3 weeks from diagnosis to death. But I know this is just one case and everyone is so very different.
God bless.

[Kimmydee2]

Just an update to my June 10th post.....I ended up making the drive to L.A. that day.  My mom and I talked with the doc and we pulled my uncle off dialysis and put him on comfort care.  His son was able to make it down from San Francisco and they had been estranged for a few years.  My uncle woke up and was able to make amends.  We said our goodbyes and he was remarkably with it for a few days.  He passed away peacefully on June 13, 2010, age 54.  We are all at peace with him now.

[jenagoth]

my husband has end stage liver disease he drank a lot from 26 yrs old hes now 52  i feel guilty as i find myself looking after him but feel so bitter too im cutting off my feelings so as not to feel too lost when he has gone is this wrong of me  we should be enjoying our life now our three children are settling down instead it is a life of worry and misery for me watching him trying to cope everyday with his condition  i know i sound terrible  but i have watched him nearly bleed to death been told he would not come off the life support that was four yrs ago and since then he cant walk because his hips are needing ops hes overweight  and in pain  but i get so annoyed as its self inflicted and a waste of a good life we could have had i feel i have no future and no life

[Lasharon]

I am sorry about your husband I know how you must feel. It is awful to watch a loved one suffer from this terrible disease. I don't know what to say if he has chirrosis (cirrhosis) maybe he can get a liver transplant. But it is highly unlikely since it is very expensive and they might not give it to him fearing he will only destroy the organ. They wont give a liver transplant to someone who destroyed their own organ since they fear they will destroy the next one and it will be a waste of a perfect organ. Anyways, talk with your father take care of him and maybe you can convince him that he only has 2 choices 1. Stop drinking or 2. die I know he might not listen and think he will still live but you cannot force someone to get help if they refuse it a person has to be willing to stop drinking. What I would suggest is maybe hiding the alcohol but it might not work since he can just buy more. Yeah it is really sad to watch a loved one go through this that's why it isn't a good idea to let alcoholism take a toll on your life. Please I urge anyone not suffering from liver disease to not drink excessively if you feel like you have a drinking problem get help since later on it might be too late if you keep waiting. Read these stories and think about it is it really worth it for some booze that stays in your mouth for three seconds? The liver wont tell you it's in trouble until it's too late and the damage is irreversible. Please consider this because you wont have a clue something is wrong until it's too late.

[Lasharon]

sorry I meant to say husband not father. Also, you can try throwing his booze out but it might not work because he could buy more.

[Lasharon]

Chirrosis of the liver is a terrible disease you never want to get it because it will kill you.

[BereftDaughter]

It has been six months since my mother died.  She was an alcoholic, but also has stopped drinking in 1984.  Of course, even though you stop drinking, your disease progresses.  In 1988 her liver ceased working and she developed varices in hter esophagus and bled out several times.  She was administered a record number of blood transfusions and the sclerosis helped the hemorraghing.  Her transplant helped her live 22 years, but in the end she died the horrible death of a an alcoholic.  Her transplant medicine compromised her kidneys and tweaking her antirejection meds compromised her liver.  She died, as far as we can tell, from hepatorenal failure.  I treasure the 22 years we had with her, and wouldn't trade them with anything, but I wish wer were dealt with honestly at the end.  My mother was a fighter.  She fought to live.  Her doctors kept saying she just needed to get back her "zest."  Here is what they don't tell you:  anorexia is a definite symptom of liver failure and there is nothing at all that can be said to alleviate it.  It needs medical intervention.  Ascites weakens the body and makes it difficult for a person to get from bed to bathroom.  Ascites should be removed regularly so as to keep up the patient's strength.   Any patient who has lived a full and active life, been conscientious about her medicine, does not suddenly lose her "zest."  At the earliest junction antidepressants should be administered so that this vibrant person can continue with her full lie.And most of all:  be very wary of any painkillers given to your patient.  Some pain killers are a detriment for morale, affect an already depressed appetite, and could cause an addiction (especially regretful for those who have become sick due to alcoholism).  My mohher was very sick.  I know that.  But I feel that her care could have given her some more time with quality of life.  I would give anything to have her for one more day.  Oh, and please don't be fooled by "designer hospitals."  Many of them prolong a sufferinf patient's pain to collect information for medical journals.

[jgirl3]

My mother is currently in liver failure and has been about a month.  She has non-alcoholic cirrhosis.   She was given a month to live and has passed that.  She is in a hospice house and her stomach swells more and more daily.  We did the taps of removing liquid for a while, but that's like trying to stop a flood with a bucket.
My problem is that while I know this is a "part of life", "I'll get through it", "life goes on", I can't stop crying.  This is MY Mom and I've never had to lose her before.
Of course, there are the problems with family dynamics going on that I never thought would happen with my family, but they always surprise you.
I've turned from an intelligent, competent woman to a crumpled mess of tears every time I think about losing Mom.
Help.
Janet

[BereftDaughter]

I'm so sorry for what you are going through.  I feel your pain.  I am still trying to get through my own mother's death and it has been seven months.  Try to find someone you can talk to.  It helps.  I wish there were something I could say which could magically help you feel better.

[lesabeast]

What you are going through now, and will continue to go through is the absolute worst. I cannot comfort you with words of wisdom or false promises. I was/still am the same as you in that I was once a very level headed, rational and intelligent woman. Now I am a babbling mess. It has been 2 months now since my Mum passed away. 2 months of hell that only seems to get worse. I am yet to feel that "this gets easier" as everyone promised. Each day I wake up crying and go to bed crying. How does one live without their mother? My husband is wonderful. My two girls, whom I see my Mum in each day, are only 5 and 8 and I want to be a wonderful mother to them but am fearful for them for the day I leave them. I thought the knwoledge of Mum leaving me was painful, now she is gone it is so much worse.
What I will say is, no matter how much pain she is in, how incoherent she becomes, just cherish your every minute with her. I have so much more pain for the hours I missed that I should have been with her. For the conversations not had and what I still could of told her in the living. Make what you have still got count.

[keely100]

Hello all,

I am slowly watching my mother-n-law pass away right in front of me. She has been an alcoholic for over 20 years or so. She refuses to seek any medical treatment. We were however able to get her to the hospital on Tuesday but once we got there she refused medical treatment. She can only say one or two words at a time. She stopped eating a few days ago and moans alot. I would say she has lost about 80 pounds in the past 2 months which is unbelievable. Rapid heart race and just weak as ever. What do we do if she doesn't want to be helped? Could it be that she can't think for herself anymore? I must say she has always been the type of person to do what she wants to do regardless if it's right or wrong. She doesn't want to be helped and its really sad. I called The Dept Of Human Services to see if possibly my husband and I could get some kind of medical power of attorney over her. They are actually coming to investigate her living conditions within 72 hours(which are so unfit). I have never seen death but everyday I feel as though she is near it. Can anyone help us. We want her to keep fighting but she refuses help and says that she is getting better.

[BereftDaughter]

Keely, you don't say how old your mother-in-law is.  Is her stomach/abdomen swollen with fluid?  If so, that is ascites and it means that her liver is failing to function.  It is hard to know, without a medical diagnosis, whether she is suffering from liver failure or a failure of the will to live.  I am very sorry for your pain.  You and your husband will need to be there for each other.  God Bless.

[padewan]

My husband was an alcoholic for about 20 yrs.  He completely stopped drinking in 2007.  He had been told by a liver specialist the year before that he had liver disease.  After some tests, he was also told that he had Barrett's eophagus, portal hypertension, nodes in his stomach, ascites, and moderate cirrhosis.  My husband is very intelligent, but chose to ignore the dr's advice concerning a good healthy diet and losing weight.  He became diabetic.  I was very concerned, but he wouldn't quit eating hamburgers, french fries, and sweets.  So  I finally shut up about it and decided if he doesn't listen, what can I do about it.

He lost his job due to illness, and ended up going to the VA for medical treatment.  His nurse practioner there did not address his liver, but told him to simply lose weight.

A few weeks ago, I noticed him rapidly gaining weight and acting weird.  ( this was not uncommon),.  I went to the dr with him, and she finally becane concerned about the liver and fluid retention.  

To make a long story shorter, she sent him home with very strong diuretics, and ordered blood work.  She called him and said his ammonia levels were high and said she was sending out Lactolose for him to take,

He seriously lost 50 lbs in 4 days.  He was hurting all over and got sleepier and sleepier, and was talking out of his head and sweeling.
His right side started looking very enlarged.

I took him to the er one night and they admitted him into the hospital.  They administered Lactolose and iv's.  His kidneys were not working well due to the np overdosing him on diuretics we were told, and they did alot of tests and blood work and said he had hepatic enceohalopathy.  i had been researching everything about this online at this time and everything pointed to stage 4 cirrhosi.  Noone would diagnose it though and said they did not really know how bad it is.  It was frustrating, not getting a straight answer.  They referred him to a liver spcialist right away.

We saw him last week and he said my husband has stage 4 liver disease and will need a liver transplant.  He wants him to lose 100 lbs in 6 months and readjusted his Lactolose and dieuretic disages.  He warned me for what signs to look for in emergency situations, and put me in charge of my huuby's care.  He told us, no salt, but protein ok, cause the protein idea is old school?
Now everything I read onlind disagrees with that idea.

We had both applied for disability and was turned down.  2 days after my husband got out of the hospital, we had our 2nd hearing with attorney befor the judge.  Now that John is terminal we hope they pass his disability.

He never had children, and we have been married for 4 yrs, and known each other for 6 years.

I had lost my previous spouse from a sudden massive mycardia infraction in 2002.  

I am spastic now.  Very nervous and concerned for my husband.  it seems every little thing with him I am watching, weight gain, swelling, talking weird, ect.

I have degenerative arthritus, and a bad colon, and we both have diabetes.  So I am ill alot, and I am trying to be strong for him.

I really wonder how long my husband has without a transplant.  He has had theses symptoms for a long time, now that I look back....

He is trying everything he can now to try and stay alive.

Please someone talk to me here if this forum is still open.....We are both Christians, and are praying.  We know God can heal, but doesn't always choose too,

[BereftDaughter]

Padewan, what do I know about what will happen for you?  I do know that prayer helps.  I truly believe in it and I will pray for you and your husband.  Your husband has an uphill battle. His age, his liver, damage to any surrounding tissue, blood counts and his diabetes.  I hope he is, indeed, a candidate for a transplant.  God bless you.  Miracles happen.  Be as upbeat as you can for your husband, but take time to take care of yourself.

[JuleG]

My Father is currently in the hospital suffering from cirrhosis and dieing.  He has been there since Wed. and lost all ability to reason.  He has not taken in any food or water since Sunday.  He is confused and agitated and it is hard to see someone you love suffer so much.  The doctor said it is just a matter of days now.  Funny thing though he has been bed ridden since Saturday but today the Pallative Doctor walked him down the hall and back. Something he said was from the agitation, referring to it as terminal agitation.  They have stopped all his medication (Lactilose) as of Thursday saying it will prolong the inevitable and make my dad very uncomfortable continuing with it.  He wont take anything by mouth so they said they would have to use more invasive measures.  This is something my dad said he did not want back in August when he was still able to think and communicate like normal.  He said he only wanted nutrition and water if he was able to ask for it. He is not so he is in the hospital waiting this horrible thing out.  It is so very hard to see this and it isn't happening quickly.  The Doctor didn't think he was going to make it past Sunday.  So I just wait in despair..it is awful.  The most difficult thing I have ever seen anyone go through. So God Bless to all of you going through this or who have gone through this with a loved one. I am so sorry for you.  

[womyn42]

My baby sister, age 52, is apparently dying of multiple organ failure secondary to liver disease.  Unfortunately, our whole family, and all but one of her 5 children have been estranged from her for many many years, due to her severe pathological personality issues.  After decades of hearing her tell people she had brain cancer, breast cancer, and other exotic diseases, it seems that she really IS dying now.  She was in the hospital, but has apparently been discharged to her home with hospice care.  My mother went to see her, and says that she became progressively severely jaundiced, including her eyeballs, and is basically incontinent of both bladder and bowel, and mostly incoherant (but due, she thinks, more to heavy pain medication than any disease process).  I'm just wondering if anyone has any ideas how long she has if she is at this point in her disease.  I am not sure if I want to try to see her before she passes....she has caused much pain and sorrow to her family, and even now, she continues to do so.....

[Nelbus]

I am in my 20's and just recently lost my father at 50 yrs old just 2 days after his birthday. He had Diabetes, Hepatitis C, and towards the end had thrombosis and his kidneys shut down. He had been diagnosed about 10 years ago with Hep. C, (We think from A blood transfusion he had before they screened.) He continued to drink heavily and not really do anything I would say about 10 years went by until last year he had went to the ER from sever pain and the ER Doctor's told him they would be surprised if he lived more than 6 months. He had been evaluated and the Gastrointenoligst was saying he would be fine and he was trying hard to get him on the liver transplant,and no family members could be organ donors  because his liver was so bad they said he needed a full liver. Well A year later he had completely quit drinking since the diagnoses from ER, He was doing extensive research every day at home about getting his transplant from the Mayo Clinic. Well funny thing is his disability he had gotten just a few months before his death ( has a law that you can not draw MediCARE until after 2 yrs of being on disability) So he had medicaid and was restricted now to where he could have a transplant. Although my father paid hundreds of thousands of dollars into the system over his lifetime, the government/state failed to help at all. His Gasto. Dr. Finally supposedly worked something out with Barnes Jewish in St. Louis ( We live in Arkansas btw) So this would be a month before his passed. They emergency transported him to Barnes to get a transplant, everything was a go ahead. Well he was still talking to us and everything was fine. They told us he was getting the next liver available that matched perfectly, and we were confident and went back to AR to work (so we could pay rent) . When we get back to AR the Doctors call us and say that they cant get medicaid to budge and that they would not pay for the surgery, medicare would not kick in   even though he is supposed to receive it in April 10'. I guess on Oct. 31 they said by that point my dad had developed thrombosis, meaning that he would die on the table if they operated. If The System hadn't messed around for a week, none of this might not of happend. SO anyways they call us at work and say that they thought he would be going in the next 24 hours and to tell all of his loved ones to say their last good byes. When we got to St. Louis my dad was still half coherent the first day and then started to become more an more un aware of what was going on. He would sleep but when we arrived he was alert and said something minor to all of us, that we all loved eachother, and he would talk about how he wanted to go home, and that he would be fine. But we weren't sure how to tell him or if we should since he was so out of it. We wanted him to think happy thought and not be scared of death in his last days for my father has always been very emotional and just overall a wonderful dad my whole life. So finally we took his consideration of "going home" We knew that he couldn't go to the house with minimal care from the nurses, so he went to the Hospice house in Bentonville AR. He was transported by ambulance and my brother rode with him. Once we got to hospice for days he would say something to one of the family members briefly( LIke just looking at them maybe saying i love you to and that was it.) after about a day of being there he didnt take any food at all and would barely sip from a straw. We had to wet his mouth with this swab because everntually he stopped drinking. The Dr. said after they stop swallowing they normally go up to 3 days after. Well after 1 week exactly we got the call saying his fingernails had turned blue, which meant he had a couple hours max left, so we hurried down there. I also forgot to mention he was GLOWING he was so yellow. His tears were yellow and was barely secreting bowel movements. That morning we got in there he was gasping for air with his eyes open but you could tell he was not focusing. He would just gasp for air rapidly. The nurse said he coudld still hear us. We all gathered around him at  seperate intervals and told him how much we loved him, I played some of his favorite jazz songs in the backround cuz i knew it would comfort his subconscious if he could hear, because he was always huge into music. Pretty soon the nurse came an said he was about to take his last breath. I told my dad I loved him so much kissed him on the head as i rubbed his arm. he took his last breath and died at the hands of his family at 50 years old and 2 days after his bday. 11-11-1960/11-13-2010 . I  feel the very same way all of you do and didnt know how common this was. I am still very much in shock and feel like its surreal, and am scared that I have not properly mourned even tho I went to the funeral and made his memorial DVD. I feel like one of these days I am giong to freak out. I hope there is something I can do to cope, and pray for all of you that are also going through with this. I have never lost anyone in my life, and now lost the closest person to me, for I am a daddys girl :*( I would love to hear how any of you coped with this for any information would help. So sorry to write the book! But I just had to get it all out!! Thanks- Girl In AR.

[cindy132]

I have my little brother in the hospital right now he is 43, he was dignosed with liver cirrhoses but he continued to drink, he was admitted into ER and ICU on the 8th of Nov. On the 15th he was moved out of ICU into a regular room where they continue IVs and he was talking, you can barley hear him, he was alert he knew us and smiled he would get emotional when he saw me come into his room, he was eating very little I mean like 2/4 spoonfull of soft food, I would talk and pray with him, and on the 19th they removed all IVs, medications and he only has oxygen and he is given morphen when he starts to feel uncomfortable, the doctors said they did all they can, the liver is gone and we will keep him comfortable untill hes gone. He has all the signs and symtoms (symptoms) of cirrhoses his breathing was deep, he is very thin now, it is now three days since he last eat or drank water, we use the wet sponge around and in his mouth, today his BP was 72/40 I don't really know what that means but it don't sound good, yesturday he was moving around and making sounds and today he slept, his breathing is not as heavy as yesturday. I m praying he would hurry and go, I know that sounds self-fish and horable but I know he will not be suffering, no more pain, I just pray that he goes peacefully in his sleep. The family are all there with him, we all take naps all night. Thank you for all prayers.

[Jackson1974]

My mom just died of liver disease on Oct 2nd. And I am sure as u all know, I am hurting and miss her so much. What I do not understand is why couldn't the doctors listen to us in the beginning?  2yrs ago she came to be with me for the birth of my daughter. She was here for a month, and she seemed to be her normal self, lots of energy, waking up with my daughter so me and my husband could get some sleep. I had to have my daughter by C-section, so I had no energy no where. Well in June of 09 she got admitted to the hospital because of her low thyroid.  She ran out of her meds due to her losing med coverage, and her normal PCP wouldn't grant a temporary partial RX intil she could into the free clinic which had a 4 week waiting list.  Herr PCP said to us she needed a blood test. Well we told him about the clinic list and not in so many words, he said "well thats not my problem".  She went into a mexidema coma, and the ER doc must of have just got his med degree because he told us that mom was suffering from a psychotic break.  Well neddless to say I just shook my head is disbelief at the sheer stupidy.  Well she did get better when I requested another doc and pissed off the current one.  Well after that whole mess,she didn't seem to be the same after that.   They never did a liver function test test like they said they did after I requested one. Because if they did, they would of caught the cirrhosis and how advanced it was because she died a little more then a year after this incident.  Her potassium level kept dropping, they didn't know why. And they told us it was probably just her thyroid acting up.  While I am noit a doctor, I did do my research and I saw that she had a few symptoms of liver failure.  Again, nobody listened to me. It was only when I was threatened to be kicked out of the hospital that a doctor fianlly told me that he will do a complete exam of her if i would quit causing "disorder".  It was then when he found she was end stage liver disease, and the only thing that was gonna save her was a transplant.  I was a 90% match and was able to donate my liver to her. Then the government step in (she had medicaid) and wouldn't cover a live donor transplant. I had to leave the hospital before i was put in jail.  She died while waiting for a transplant.  The doc do not know what caused this. She didn't drink, smoke, do drugs ever.  Some think it was due to the weight loss surgery she has back in 1976, when it was first introduced.  I didn't find anybody form back then getting sick like my mom did. Then they thought it might be due to a fatty liver, that I could see.  I don't know if I got more aggresive (aggressive), got an atty, beat up a doctor, (just kidding, although there were times).  Sometimes I feel there was more that could have been done. Now all I have is questions questions and more questions. What caused this? Was it the thyroid fall out that did it? I never will know.  Thisw has been very hard for me, especially during the holidays.   How can I make this pain and guilt go away?? Does it get eventally get better?

[ko0ko]

Sorry for your loss. You couldn't have given her your liver because you couldn't live without yours. Unlike kidneys, we only have one liver. Livers that are available for transplant come from cadavers of people who have just died.

[Sherub]

Educate yourself before posting.  Re-read the previous post.  She said "live donor transplant".  Yes, a live person can donate 'part' of their liver, which quickly regrows to it's full size.  

Don't post a comment unless you know what you are talking about.

I am so sorry for all your losses.  I lost my mother 20 years ago to liver disease and it's not an easy loss for anyone.

[charley191]

I know what you all are experiencing. My mom was diagnosed with congestive heart failure over a year and a half. On top of that her heart was enlarged due to CHF and a clot is also in her heart. over a year of taking Coreg, lisonopril, lasix, lovastatin, she was later diagnosed with COPD. Two months later, in July of 2010, my mom went into respiratory failure and was in ICU for almost a month. The doctors said she had DIC-blood clots all over body (dissementaed intravascular congulant) and that not too many people survive this. She was taking coumadin after her ICD implantation, but that failed. Thank God, two months before this incident, the doctor suggested a Green Field Filter to be implanted. In ICU, t, she was on a ventilator that was keeping her alive and wasn't responding for about two days. They said her kidneys were failing, she had a stomach aneurysm and you name it. The doctors gave her 24 hours and told me that I needed to make a decision by then.  Before leaving ICU, I stood by her bed and told her that she is a fighter and that she can beat this. Her eyes were closed, but I saw her eyelids move. When I saw that, I knew that she heard me and responded to me.I could pull the plug on my mom because that gave me hope. The next day, my mom's woke up and her kidneys started working and she urinated so much. Anyway, she still was on the ventilator and couldn't talk but was trying to. She got off the ventilator about two days later. Two days later she moved out of ICU into a regular room. She stayed for a week or so and before leaving the doctors stated that she had chirrosis (cirrhosis) of the liver due to a clot in her liver or portal vein. They told me that I need to get things in order, a living will and health care power of attorney because she is not going to make. This has been since July 2010 (5 months ago) and my mom is still here continuing her good fight of faith. Everyday, I see how she suffers with CHF and liver failure. However, she tries to be strong and always state that she is doing "pretty good" She has been having headaches, and nosebleeds. In November, she went to ER complaining that she didn't feel good. They stated that she had Advanced Acisties(fluid in belly) and they sent her home and didn't do anything about it.  A few weeks ago, she went back to ER and they said that she was dehydrated and her potassium level was too high and sent her home. She is truly a woman of strength because she endures the suffering. I am the point now that I don't want to see her suffer. Please pray for my family to endure this time of suffering.
Carmen from South Carolina

[ard40]

My mother died just three months ago (Sept. 2010).  She had alcoholic liver disease and even though I took her to a liver specialist three years ago and he diagnosed her with stage 2 liver disease and told her to stop drinking right then and there, she did not.  He told her she'd live another 3 years or so and then she'd die.  That is exactly what happened.  She was just 62 and left 7 children and 13 grandchildren behind.  Alcoholism is not a disease.  It's an addiction and a selfish act by a deluded person.  The end was horrible.  Hospice is horrible.  Watching my mother fade away and die in a hospital bed in her home, counting the seconds between breaths and knowing it was the end - all of it was pointless and could have been avoided.  If you see your loved one drinking and their skin becomes yellowish, their abdomen enlarges and (obviosly) they are heavy drinkers, do whatever it takes to stop them.  They'll thank you when they sober up.

[tjcarter]

I have cirrhosis of the liver. I don't drink and haven't even touched alcohol in 20 years. I am told it is fatty liver. Never even heard of such a thing before. I exercise and do everything I could for my heart just to find I will most likely die from my liver. I had symptoms for over a year and no one could figure out what it was. The only thing showing up in my blood work was a low platelet count.  Even now the doctors are telling me little about what to expect. I feel I have no one to talk to. Its like you hate to depress family or friends by talking about your life when they know you really have none at this point. I think the worst thing I feel at this point is lonely. I have no idea even what stage I'm in or how much longer I can expect to live. I have pain in the liver area and swelling which is a constant reminder that I am growing short of time. Honestly I don't want to put my family or myself through the things I have been reading about here. I would like to end my life with a little dignity but I sometimes get afraid that even for this I will wait too long. I have a son in college and would like to see him graduate. I use to think I would like to know in advance but honestly I am not so sure now. Maybe the sudden heart attack is more of a mercy than I once thought. Thanks for giving me a place to write my thoughts.

[mark072]

for tjcarter,

From your writing I understand that you did nothing wrong. I feel so sad. You can contact me at ***@**** and see if I can help you through this difficult time.

[beth377]

hi i lost my uncle on the 12th of january 2011. He was found by his Land Lord at 4.30ish and paramedics pronounced him dead at the scene he was 41 just 2 days before he died. He was an alcoholic. We had post mortem result today and he died from liver failure. From what we know he was in the local shop on monday the 10th buying lemsips so obviously he wasnt feeling to good, i dont know how long people live i suppose it all varies but all i can say is i hope he didnt suffer and i hope everyone elses loved ones dont or didnt suffer either in anyway. He was 14 years older than myself what a waste of a life if only he could have kicked his illness. I know it was his own fault and it makes you so angry that they just will not except help but he was to young to die. I just hope his death makes people realise that it doesnt matter how old you are if your a alcoholic your putting your body through a tremendous risk. Ask yourself is it really worth it. I know my answer NO it really isnt.

[slim222]

My Aunt boyfriend just died this morning of cirrhosis of the liver, and I don't understand how anyone could let themselves get to that piont, that they would choose drinking over living! Can anyone explain why? He was sure a good person, loving,caring and a very kind hearted person. He would be greatly missed!

[tamethot]

My 45 yr old husband was recently diagnosed with acute hepatic failure.  October 21, 2010, he had been complaining of a toothache but wouldn't go to the dentist.  After much complaining of pain, I told him to go eat an aspirin.  I don't know how many aspirin he ate, but the next day, he started vomitting blood and gobs of it.  I pleaded with him to go to the emergency room but he refused.  After vomitting blood for almost 2 days, he finally just kind of exploded from both ends, was sweating profusely, and almost passed out on me.  It was only then that he would allow me to call ems to come and help.  By the time he got to the ER, he had lost over 4 units of blood and needed a transfusion.  He was in ICU for 2 days at the local hospital when the attending physician pulled me into the hall, looked me square in the face and told me that my husband was a "malnourished drunk", that his liver enzymes had went from in the 100's when he arrived there to over 10,000 and was still climbing, my husband was dying and they didn't know what was wrong with him and couldn't do anything for him.  My husband is a 285 lb, 6 ft tall man and although he had previously been a terribly alcoholic for well over 20 yrs, he had quit drinking almost 6 years ago.  I told the doctor that he was an idiot and that if he couldn't find out what was wrong with him to find someone who could.  At this point, Hepatic encaphalapothy had set in and he didn't even know his own name let alone who I was or where he was.  The local hospital transferred him to a larger hospital in a city almost an hour from our home.  When I arrived there, their doctors told me that my husband had lost so much blood that he shocked his liver, killed it, and needed a transplant.  He was in acute hepatic failure.  I told the doctor we didn't have insurance to which he replied that a transplant would not be an option then and my husband may only have a few hours/days to live.  They started pumping him full of anti-fungals and antibiotics.  He was in ICU at that hospital for another 2 days and then they moved him to the hospice floor for the next 4.  Tests done while he was in the hospital showed cirrhosis (alcoholic, which was not a huge surprise), and Hep C.  He had been in a car accident back in the 80's and may have contracted the Hep C from a blood transfusion at that time.  Nevertheless, it had went undetected and untreated for the last 30 years.  His confusion started to diminish and on the 5th day, he started to retain fluids.  On the 6th day, they drained 2.5 liters of fluids from him and discharged him to come home an hour later.  They didn't give him a water pill, a pain pill, nothing...just sent him home to die because there was nothing they could do for him.  Within hours of being home, I could literally see him swelling up again.  I was able to talk him into seeing a local doctor who told him he had two options.  He could either go to infection control specialists who may or may not be able to find a treatment that may or may not help him and could even kill him in the process.  The treatment was described as similar to chemotherapy.  It would make him sick and miserable.  The other option was to go on hospice now.  My husband said he was 45 years old and wanted to live to live, not live to die and opted to not have any treatment.  My husband is dying.  His doctor put him on water pills, he cut out salt in his diet as well as preservatives and quit smoking cigarettes after 20+ years.  He is not swollen anymore because of the changes and water pills and his eyes that had turned a dark yellow in the hospital are back to white again.  He cannot lay on his right side due to pain, his voice comes and goes due to "vericose" veins (I know there's a technical term) in his throat, he gets out of breath very easily, he sleeps a lot and very abnormal hours, his thought processes are unclear at times and I've witnessed delusional thoughts as well.  There was one week where he threatened to "kill me" almost every single day.  His breath has a terrible odor to it and even if I can almost forget what is happening to him, all I have to do is stand too close and smell his breath to be reminded.  The doctors said he may have a year to live and that was 3 months ago.  I am a mess.  I have anxiety attacks, I shake uncontrollably, I can't think straight, and I am scared.  I hate watching this happen to him but I just try to be as positive as I can and make him as happy as he can be in what may be his final days.  I've had many tests over the years but this is just about killing me.

[friend68]

Hi everyone there is a wonderful supportgroup at mdjunction.com

[leggy978]

My Dad has renal failure cardio myothapy and now what the doctors says is advanced stages of  cirrhosis of the liver i just want to know what the signs are of the end as he suffers a great deal with this. he has just gone yellow he is constantly confused he spends most of the day asleep his feet are blue he is feeling pain in multiple joints he is carrying a large amount of fluid but this seems to have gone on since christmas.is going yellow one of the last things or can this happen at any time. if any one can give me advice that would be really appreciated.

[meilin101241]

My dad pass away last month due to acutate liver failure, I am still in great pain.  We never knew he have HVB until doctor told us.  He did took some antibacitc before he pass. I am in so much regret that I did not becareful with medication he took.  I am very confused.  He did took predizone and pain killer everyday for 15 years.  He is fine most of the time before you die.  Can anyone tell me more information.  I am in great regret that he took antibactic. I think that may contribute to his death?

mei

[dizzyd1600]

I just lost my Dad on May 20.  He had a liver transplant 8 years ago but had hepatitis which attacked his new liver.  I did not even know that my Dad was that sick the last year but as I look back he was.   He went to the hospital and they said that he just had a swollen stomach and sent him home on a Saturday, by the next Tuesday the family dr sent him back at the hospital saying he had a stomach infection and by Friday he was gone.  The did give us false hope saying he may have up to 6 months, but I believe his 6 months were last winter as now I look back and he did show all the signs of end liver disease.  I miss my Dad so much.  The whole world feels like a different place and I need to find strength to move on.  Although I know he would want me to move on because he had such a strong love of life.  I am going to try to move forward but a big piece of me is gone.

[lizziehayes]

My dad has been very sick for a while now. He had a liver transplant in June of 2004. He was doing fine for the first few years after but then it seemed like he was getting worse. Lately he would spends weeks in the hospital. I am going into my senior year and am the oldest of 4 in my family. SInce about November 2010 he hasnt been able to work. He misses everything because he is tired. I come home from school and he is asleep. This past month has been very scary. I've picked up alot of slack in my family and am taking extra shifts at work because we need the money. He hasnt gotten out of bed in weeks, and is barely eating anything. He looks horrible to the point it is hard to talk to him without becoming upset. I miss the way things were. I can't see someone suffer, I would do anything to help him out. The hardest thing is it is eating me alive & i can barely keep a smile on my face but I can't shead a tear because I have so many people looking to me to stay strong. It is so hard to talk to anyone about this. I just need someone to tell me it will all be okay. Pleasee

[BereftDaughter]

Your dad will definitely will make things worse for himself, and maybe even cause irreparable damage if he does not eat.  Please have him see his doctor.  Is he still taking his medication for immunosuppression?  Has he been keeping up with his bloodwork?  He needs to make sure that he does not have chronic rejection (slow rejection) or some kind of infection.  His fatigue is a tip-off that something is not right.  Please talk to his doctor right away.  When my mother stopped eating, this caused muscle wasting to the point that she could not ever regain her strength.  Your father may have time on his side.  Please seek medical intervention.  And take care of yourself.  Like you, I was the caretaker of the family, the one who had to be strong and I am still picking up the pieces of myself.  Please let me know how you are doing.  I'm here for you.

[ssrsh66]

My brother is in his last days or weeks he is yellow from head yo toe his stomache is swollen they have done 2 belly taps the last one they got 17 # of fluid that was just 2,weeks ago and last he was rushed BACK to the hospital for a 3rd and final tap it was unsuccessable hr was sent home they said their is Nothing else they can do he is not eatin barrly no urine outout and puking fecies its horrible i hope this helps u to know s little of What to expect i will be Praying

[missingher132]

My best friend and I went to her Dr. appt on a July day 2009. She was informed then and there that within a yer she would be gone if she didn't STOP DRINKING. By December she had lost some  of her body  control and had to scooch to the bathroom. Her legs had given out, was swollen thoughout her body. Yellowing of her skin around Christmas  She was repeatng herself and living in the "past". Feb 18th she was found by her husband , and rushed to the hospital. She lasted 3 weeks in a coma and the Drs and Nurses did everything possible for her comfort. She woke for 2 days ....enough time to say I love you and fell into another coma only to die March 10. 2010 . Please,  your body WILL give out . Loss of hunger, weakness, not knowing how to function everyday task, not able to understand command  and finally your whole body shuts down because your brain doesnt understand .. Drinking is ok ....if limited. More than 2 or 3 is not.... you need help. I still grieve over her passing and now hoping another person in my life takes heed to my warning. I cant bear to see another one lose his fight to Liver cirrhosis. Remember...  one 12 ounce beer is equal to 1/4 glass of wine or 1 shot of Vodka =many years of your life WITHOUT love ones. I MISS HER!!!!!!!!!!!!!!! There are FREE clinics in most cities AA for one. Show them the pic, pull infor up on the internet HELP them,,,,They need our love and support! Thank you

[araehunter]

I just lost my father on August 31st to acute liver failure.  Most of the stories i've read on this page tell the same story as when he died.  I knew my father was unhealthy and still drinking, but he never told anyone when he felt bad - didn't want to worry us, i guess.  He was rushed to the hospital on Friday, August 26th because he had a seizure in the doctor's office and was severely jaundiced...i went straight away..

When i saw him, my gut just dropped...but he looked so embarrassed.  I had just got engaged on that wednesday, so he wanted to see my ring and tell me how happy he was.  He was showing off to all the nurses and physicians assistants that his daughter was engaged.  He was really calm and quiet that first day in the ER, and we talked for a little while.  he held my hand and told me "This is scary" and later "Well, i really screwed the pooch on this one."  we tried to stay positive and i tried not to cry, and then they took him for some tests and i left for the night.

the next day, saturday, he was still with-it a little bit.  could still talk and keep his eyes open, but he was confused about what he was saying, couldn't get the right words out.  again i said "i love you" and "goodnight" and left for the night.

Sunday was the hardest, i think.  He couldn't really open his eyes, and his face was all screwed up like he was constantly crying. But he would say things every so often...i held his hand and told him i loved him and he said - breathlessly, labored - "i love you too, sweetpea".  that was the last thing he said to me.  

By monday he couldn't speak at all and his internal bleading was so bad, his mouth was constantly leaking blood.  he was agitated and smelly and uncomfortable.  that was the day the doctors told us there was nothing else they could do.  He went to hospice that night and me and my sister rode in the ambulance with him.  They said he might not even make it there...so the whole time i just held his hand and waited to see if he would survive the trip.

We got there ok, and once he was in his room, they cleaned him up...the next day, Tuesday, he seemed so much more comfortable.  the morphine had kicked in, he was clean and smelled nice, the AC was making the room super comfortable, and everyone went in to say their goodbyes.  i remember i just held his hand and stroked his hair and said i thought he was an awesome dad, no matter what happened.  i also said "i'm not saying goodbye until you do" and then i left for the night again.  

at 3:00 Wednesday morning, my stepmother called to tell me he had passed.  i was at once completely relieved and completely devastated.  all the feelings have just come in waves and waves.  first relief, then overwhelming sadness.  Dad had been a really unhealthy alcoholic for years and years...i guess part of me was sort of expecting this someday...

...but the "never coming back" thing...that's something i've never ever been faced with.  i guess i will again someday, and so will everyone.  it's just very, very hard.

[pagan707]

I lost my dad in 1995 due to cirrhoses of the liver. I was only eleven or twelve at the time, so as far as the symptoms and the stages go with details I can't give you that. But I do remember that he was hospitalized a lot and he would not quit drinking. It was April 19, 1995, (the same day of the Oklahoma Bombings) I woke up to go to school and I found him dead. This is quite a dramatizing experience for a little kid. His face and his body were so cold. I felt as if he didn't really love me or really give a damn about me and my sister because he wouldn't stop, and led to his death. After he had passed, I had to be the strong for my sister and my mom, and this put a lot of stress and strain on a child. I grew up real quick. I was the youngest in my family as well. But now do I realize that he was just an addict, and addict to alchol. He was only forty-two when he passed. By the time I was fifteen I was diagnosed as a manic depressent, and what any teenager does I turned to the streets. Needless to say, now that I've learned my hard lessons, and actually understand life a little bit more, I can see where he fell. And I can see how my reaction to it damanged myself. I wish I could give you details of everything, but for some reason my child hood is a blurr. Probably due to this event. I still carry the scars that my father left behind, and I still carry his love that he gave in my heart. So I'm writing this to tell those that do have it due to drinking, seek help. Don't let the ones around you carry a burden like I did for ten plus years. Thank you.
Danielle Dyer

[ko0ko]

My father-in-law is slowly dying of cirrhosis. Unfortunately my husband and I live far away and can only visit every few months. We just returned from a visit after not seeing him for 6 months. His decline was dramatic. He has started suffering mental confusion. About a month ago he drank some cough medicine and had an episode of disorientation and black out. He refuses to get any help and won't accept help from us. He appears to have ascites and his skin is grey. His eyes look so sunken and hollow. Since he won't accept any help, we're not sure what we can do. We are the only family that is paying attention to him at all. I'm afraid he will go into a hepatic coma or have a stroke and will be left to die alone on the floor. We will have no way of checking on him other than calling him and he isn't good about answering the phone anyway. Today I did call his doctor's office and let them know about his condition. I told them not to let him know I called because he will be angry if he finds out. They are going to try and call him for an appointment. I'm not sure what else we can do from this distance. Any suggestions would be much appreciated.

[Annie415sf]

Hi All. It is so nice to hear real stories from people going through what I'm going through. What I've learned in these last few days that my mother has reached the end (she has stopped taking in food/fluids, bed bound, mostly sleeps all day except for crying and sometimes opening her eyes), is that death is a horrible process but it is life. I feel that at least here in America. we don't ever want to see death, some ppl stick our loved ones in "retirement communities" where we don't have to watch them get sick and die firsthand. It is just my opinion, but even though I am only 25 and watching my mother die, I feel more connected to her and life in general because of it.

Don't get me wrong, it is SO SO SO difficult to watch her cry out in pain, to see the yellow jaundice in her eyes...all I'm doing is playing her favorite music and telling her about my day like normal. I give her pain meds around the clock and when she gets really restless, Lorazepam.  Please reach out to me I will check this message board often now that I've found it!

Annie

[Josie2011]

Hi Annie,
I just read your message and wanted to tell you of my experience since my x died on the day you posted this. My x-husband, the father of my 12 year old son and 23 year old daughter died on the day you posted this message of cirrhosis. He was 50 years old and only drank beer but drank everyday. Anyways, they (the hospital staff) had my children believing that he would be better within the year with the very expensive medication they had him on but it would be a roller coaster of many ups and downs. Shortly after his last surgical repair of a varicosity in his throat they told my daughter he was not a candidate for surgery, because he was just too ill, I guess. And shortly after this he became dehydrated and malnurished and they took him back to the hospital and gave him treatment which for a short period of time he responded very well to, on his way home his blood pressure became very~very low 70/50 and they could not find a pulse. On the way back to the hospital they called my children to tell them they needed to get to the hospital because it was the end...and it was. I guess what I wanted to say, is that every body (BODY) is different and will respond different to treatment and the disease. One persons story may not indeed be what you will go through, however, my x was also very lathargic and confused and the progression from close to normal iving until his death went very fast. Four months. He did know he was sick for months before this and even said to me at one point "I am going to die, but noone can tell me what is wrong with me." Noone could diagnose him for some reason~until it was already too late. He was a good man, not what I would consider even close to a drunk, always worked and loved his children, had fun and played games, was just a good man. Enjoy your mother, be patient and pray for God's grace in her last days with you and her ascention to peace. My heart and prayers are with you.  

[Nikitajane2011]

My dad died last year on his birthday he had chirrosis (cirrhosis) of the live due to alcohol. He lived in spain so i didnt see him much. I got a phone call one morning sayin my dad was seriously ill he'd been took in hospital that morning. I got the next flight out & was in spain for tea time the same day. He was in intensive care in a coma he had a bleed in his stomach & opsophagus he also had blood poisoning and his skin was covered in purple like bruises. A couple of days after he come out of his coma he couldnt speak but was crying. The day after he was sat up in bed i thought he was getting better i told him id see him in the morning with his birthday cards but the day after he was back in a coma & had hours to live. I stayed with him till he passed id never seen anybody die before he suffered at first havin 3 seziures but went peacefully towards the end. I miss him so much & cry most days. I just didnt understand it all so i turned to the internet for answers i looked up the process of dying with chirrosis (cirrhosis) of the liver everything was the esact same what happend to my dad maybe if id of read about it before id of been expecting it. I really feel for anybody that has to go through this. My dad died on the 19th november 2010 it was his 66th birthday & i was just 23. I hope this has help some of you. Nikita xxx

[Neuroman2]

We recently experienced the ugliness of cancer.  Kimmie was diagnosed with Stage 1 Breast Cancer in July of 2005 in Austin, Texas.  Kimmie did not share with the family she had cancer. Kimmie DID NOT seek treatment.

We completed an MRI in Prescott, AZ on March 10, 2010 when I noticed Kimmie was anemic and had lost a great deal of weight.  The MRI diagnosis was Stage 4 bone, breast, lung, liver and brain.  At that point, Kimmie revealed the cancer diagnosis in in 2005 to me.  She asked me to not inform the family or her kids.

The physicians told us to get her affairs in order, get a will and enjoy the days we had left together.  And that is what we did!

We placed Kimmie in Hospice care in May of 2010 in Austin.  She was on oxygen and they checked on her weekly.  Her health began to deteriorate and we could no longer travel together.  She began blood transfusions to increase her hemoglobin count.  She had three prior to her death.  I would highly suggest blood transfusions to increase quality of life.

The Hospice staff was very encouraging and provided her oxygen and medications. The final months were on liquid morphine drip for the pain.

If you have a loved one with cancer do NOT give up HOPE.  Kimmie lived six years with cancer with NO intervention. Call the local Hospice and arrange Hospice care.  More than anything, keep them active.  Enjoy life before it is too late.  Keep their minds off the cancer and DO NOT use the cancer word around them.  

[Rosamma]

My dad passed away due to Liver Cirhossis just few weeks ago.  He lived in India.About two and a half years ago, he was admitted in the hospital and stayed 4 days in ICU with multiple organ failure. He pulled back and lived with LC untiil a month ago. He was only 68. I believe alcohol has a major part in his liver going down. By the time  We (children) came to know only 30% of liver was working and no way of regenerating...

He seem to have a good routine for past year. He went to hospital and did tapping of extra fluid from his body every 15 days. While things were going fine, for the last tapping, blood came along with the fluid retention, and the doctors gave 3 units of Blood.  I spoke to him last on Friday and he said every thing is okay. Mom said, after he spoke to me , he started rejecting food and starting thowing up. He was admitted on Saturday morning and he passed away in the sleep in the hospital on Sunday morning.  

I miss him so much. We had so many plans for next year. But I didnt know that, he will be gone so quickly.  Miss you dad... None of the children, myself, my brother not my sister were with him when he passed away. ***Bins.

[noname2308]

My father is a patient of liver cancer and passed away on 23 sep 2011 at 3.58am . This is one of my most painful moment of my life that i think would never ever to forget . he was under treatment from last January and this last 8 months we are fighting with him for his life.In his last day he has fever for last 15 days which never got cured and finally due to cardia arrest he left us alone to face this pain.On the last day he was perfectly ok at the hospital ,chat with me ate his lunch ,his evening tea and even his soup. I would never able to believe that after 1 hour he would be so serious that he wouldn't able to breath and move to ventilation and later at the early morning of 23 he left us without leaving us any evidence of pain.I know he left us and that too with such a little pain in last stage of metastatis liver cancer but still i miss him and would miss him for rest fo my life . i know i could never see him any more but could feel him every moment beside me as he is my only moral support. I LOVE U DAD. So i know what the pain through which u all are passing by and could say only one thing that this pain has no relief other than self satisfaction that he is at rest now without any medicine ,any needle and any pain..........

[momo39]

My mom passed away on October 1, 2011. She was first diagnosed in January 2005 when she came over from Russia to help with my newborn son.  After meeting her at the airport I immediately knew something was wrong - she looked pregnant at the age of 63, and was extremely thin at the same time.  A primary care physician looked at her and told me to take her to ER right away.  There she was diagnosed with liver cirrhosis and found to have a chronic hepatitis B infection.  No one in the family ever had any idea she had it!  Mom has not seen a doctor in decades... She had fluid drained and was discharged in a few days.  We started seeing a hepatologist.  For a few years she was rather stable, without accumulating fluid in her body and no need for diuretics. She regained her muscles and was doing well, taking only antacids for gastritis.  Then in May 2009 she went to Russia for a few months.  The plan was that she would return in October, but just when she was about to board a plane, turned out that her passport expired.  She then had to stay until January 2010 to get a new passport.  When she returned to the US, it was as if the nightmare of her first arrival was replaying itself.  She was swollen again, lost her muscles, and most frighteningly she started acting very strangely - that was the onset of encephalopathy.   She urinated in my children's bathtub, at times wore only underwear and was getting increasingly confused.  She hated lactulose and was reluctant to take it. During 2010 she was hospitalized thrice with encephalopathy and once with accumulating fluid in her lungs and getting short of breath.  It was becoming very difficult to keep the balance between her swelling up and drying up and developing encephalopathy.  We also had a cancer scare when her CT/MRI scans showed suspicious lesions in her liver.  However, since they did not grow in two months, we put them out of our minds.  When I brought up liver transplant, no center would take her as she had no insurance.  And she did not want to go through surgery herself.  But mom was still strong enough to walk around the neighborhood for hours.  In October she fell and fractured her shoulder after being outside for 3 hours and wearing a sweater in 90-degree weather.  But then things seemingly calmed down.  She started taking Viread (anti-hepatitis B drug) at advice of a liver specialist and maybe it helped her liver.  She was more or less stable on the constant diuretics, although she reached the highest dose.  We managed to keep encephalopathy under control with natural laxatives - papaya, peaches, pears, and occasionally lactulose.  In spring 2011 mom started deteriorating visibly - her hair stopped growing, and it became difficult for her to walk up the stairs.  She became more unstable and I got her a walking cane.  She had blood tests that were all out of whack - and started taking potassium supplement.  It improved things slightly.  Then in late September she started swelling up and getting short of breath again after drinking lots of lemon water.  The physician prescribed extra diuretics and told me to give her at least 7 of the pills.  I gave 3, and it was enough to put mom into encephalopathy again.  On Sunday night she wondered around in her room and fell three times...  The last time, my husband woke up and helped me put mom back on her bed.  However, the next morning I found her on the floor once again.  She could no longer get up and seemed to be in a lot of pain.  I called ambulance and it took her to ER - on her side, as she could not lie on her back.  There she was admitted with encepahlopathy.  She also had low blood pressure, but it went back up with the extra fluids.  She still had pain in her legs but the medical personnel did not find it a problem... I left hospital hopeful that I will bring her home in a few days, as soon as she has a nice big BM and clears her head.  On Tuesday I found her still confused, trying to get up and go to a window.  It was too painful for her to move though.  She had a good breakfast, but only ate a little lunch.  She slept when I came in the evening with the kids.  On Wednesday she was no better, and still in a lot of pain when the nurses were moving her from side to side. I called her physician and asked to check on her hip bones to see if she had a fracture.  And the same day I get a call from the hospital - they finally found she has a hip fracture, after 3 days in the hospital and all her screaming at every turn and move.  Apparently they found it by accident after taking her for another MRI of abdomen.  I was so angry at the hospital for missing it - an old lady falls four times at night and they never bother to check for a hip fracture!   I complained to the nurse in charge about mom's nurse who thought she was screaming because her legs were swollen.  The nurse also seemed unaware of mom's multiple falls.... Mom got much better nurses after that.  Wednesday I also finally saw mom's physician - he cautioned me that she may not get better, and that I needed to call the family members.  He said in her condition, anything could bring her down, even though she still walked, talked and was independent a few days ago.  But I still hoped mom would overcome this.  She was a fighter and pulled through before.  Orthopedic surgeon came in, but could not operate due to mom's low blood counts.  She got several units of platelets and hemoglobin on Thursday and seemed to improve.  She ate dinner really well - it was meat blended with potatoes - and was happy and full.  After the meal she pulled up her blanket and smiled slightly.  I left thinking that she turned the corner.  Her ammonia level apparently went down and I hoped surgery on her hip would be possible soon.  Then Friday morning as soon as I got in, I was faced with my mom lying with her feet elevated so she could get blood flow to her brain... Apparently, her blood pressure dropped to undetectable, extra fluids did not help bring it up, and the hospital now wanted me to make a choice whether to move her to ICU or to let her die comfortably with lots of pain control... Mom was screaming from pain...  I was told more intervention without possibility of pain control (it would lower her blood pressure even more) would be done in ICU and that they had only a small chance of success.   I hated to see her in so much pain and knew she would not want to endure more of that.  If she had not had a broken hip, maybe we could try to see if she could get better, but I could not put her through more of terrible pain while she undoubtedly was confused and terrified.  I told them to give her pain control and leave her alone... She had morphine and was still moaning.  Then she had two injections of propofol and they finally worked.  She could no longer speak, but still sucked on a popsicle.  I left for a couple of hours to change and get ready for the night... I was told she would pass away within a few hours.  When I came back, she already looked like she was dying.  Her breathing changed and she could no longer move her mouth or fingers.  After that it was just a slow decline in breathing... until it stopped at 3:42 am on Saturday...  Mom was just 70 years old when she died.  I knew it was going to happen and that it was going to happen soon, but it was still a shock.  After several previous scares, I thought I would be more or less used to the idea, but it is still such a terrible loss to have someone who loves you unconditionally to disappear from your life.  Rest in peace, mom.

[LT2011]

Usually, I would not write this because the pain is too much to even write about from early to mid stages of cirrhosis. I know its like watching a person kill themselves daily by drinking too much daily. I will list what happened to my father who is 63 yrs old. He believes his life is unstoppable so that is part of the reason why he kept on abusing his own body with alcohol daily.

First signs of trouble was that my father was having chronic constipation,
malnutrion, sleep deprevation, being irratable, depresssion and nose bleeds.

Stage 1 of Cirrhosis.
Doctors said my Dad only had a few months left to live.
Doctors prescibed Lactulose to stop the chronic constipation which will help get rid of the toxins in the body. If my father continues to drink he will surely die within a month or sooner because the liver is already shrinking.


Luckly, my father stopped drinking after his failed attempts on medicating himself back to health. Thinking he could speed up his recovery by taking more medication like Lactulose. Or even no medication at all. Only made him get even worst. It got soo bad that he had to depend on us to take care of him. He finally came to terms with his own life about drinking and did not continue to drink or could not drink. At this point it looked like he was going die within days.

After finding out his failed attempts on his self-medication routines. We decided to follow as doctors ordered on taking the proper daily dosage of lactulose which is the primary medication against early stages of liver failure. There was no way we would of known if my Dad was taking the medication improperly because it was already too late to find out. My Dad was soo incohernt that he could not really speak or even remember.
How did we find this out? It literally took us 4-5 months to find this out because we assumed he was following doctors orders from the start. When he really wasnt. At the 5th month we saw that he was has gotten better from the last emergency visit to the hospital. But, when they released him home to us he had gotten worst.  We thought the hospital must be doing something right and we are doing something wrong at home. We copied the hospital's daily routine, similiar types of foods, liquids etc. We even made a chart for my Dad for his daily symptoms, habits and bowel movements. Daily lactulose intake after being released from ICU. Spoke with our family doctor for advice, and researched symptoms.  The dosage of lactulose is soo important that if given too much is dangerous. Giving too little is dangerous aswell. Lactulose dosage has to be closely monitored because it is vital to combat against toxin build up within the liver and colon.  We ended up giving the dosage as the doctors ordered and he slowly got better. I know its very hard to see if the medication is working or not when doctors prescribe it. Sometimes we have to dig for the truth to really know if it is working or not before we make our decisions for a dying loved one. Our Dad got soo much better that our Doctor told us that my father could live up to 4-5 years or longer.

To do the right thing you will have to know if you are doing the right thing or not. Pray for him and hope that he will change before its too late. And sometimes you have to dig for the truth to discover the lies.

Keep the Faith and God Bless You

[heartbroken79]

i have been reading some of the comments that have been left here and my heart goes out to every single 1 of you
i know how it feels to watch a loved 1 slowly kill themself my sister is 34 and she always liked a drink but since my nephew was born in feb 2006 she really hit the bottle she was drinking a litre bottle of vodka sometimes 2 bottles a day she went into total organ failure on the 6th of september 2007 and spent 4 months on a life support and 5 months in hospital she came home promising us she would never drink again until we found out 3 months later she had been drinking beer her excuse was her body had went through detox but her mind hadnt so the rollercoster began again for the past 3 years we've watched as shes been drinking herself into oblivion and there is not 1 thing we can do to stop her my mum has tried so many different things from getting her to move in with her for a few weeks getting librium and other meds from the doctor so she can self-detox but nothing ever works shes lost her kids her husband her job and her house in the past 18 months shes been in hospital 10 times the past 4 times shes been in the whole family has been called for as they didnt think she was gonna make it through the night shes been in homeless shelters shes been mugged and spent the night in jail most of the time shes yellow and my mum has had to bedbath her on more than a few occasions shes had so much help from so many people but keeps throwing it back in there faces she blames my mum for her being an alcoholic but she has to blame some1 dont get me wrong i love my sister with all my heart but she is really selfish and always has been she doesnt bother with her kids unless its to hurt my mum who looks after her daughter and has done for the past 5 years or my brother-in-law who looks after my nephew she has caused so many arguments in our family and has turned my mums own brothers and sisters against her i dont speak to my dad but my sister does and the hurtful things she told him about me had me crying for 3 days and he believed every word that came outta her mouth because he didnt know how bad it was until my mum told him
the worst thing about it all is the amount of people i have seen in hospital who have dieseases that are no fault of there own wanting to live but cant and my sister who had it all threw it all away and is still in self-destruct mode slowly killing herself day by day and not willing to get help its so sad

thinking of you all <3 xxx

[brandi656]

My dad is 48 and was diagnosed a couple years ago with cirrhosis from alcoholism. He has had the bands placed around his esophagus 9 different times. He has to go every five weeks to have the fluid drained from his stomach. They usually remove 12 to 15L everytime. We were told he would have a year then 6 months, we were even told once that my dad wouldnt make it during his flight to a different hospital. He has been very delusional lately and is currently in the psychiatric wing. They are not giving him any medication or an IV even. We were told that he will not get a transplant and he will not get better. When I asked if he was end stage the doctors said they have never heard that term. He has not been on dialysis. We cant seem to get any kind of information at all from his doctors. He is sleeping all day and up most of the night. He is still eating tho. My family would really like some kind of idea as to what to expect. It seems that the only information we ever get is when we research it ourselves on the internet. Can someone please give us some kind of idea as to what to expect before he dies?

[georgie333]

My husband died age 48 in May this year of a brain heamorrage and alchoholic liver disease.
    I knew he was a very heavy drinker,and since loosing his job six months previously had been worse.
  I didn't know wabout the liver disease,he must have know and kept it from me,
The last six months of his life he was getting confused and short term memory loss,I put it down to depression from the job loss.
   He had the bleed due to the liver disease .
I never could have stopped the drinking,but have forgiven him-I hope nobody else has to witness what myself and my seventeen year older daughter witnessed and the end of his life in hospital-will haunt us forever and we are going through the most terrible grief.

[Nala1968]

My mom is in the hospital right now bloodwork isn't as bad as some but amonia (ammonia) levels are around 75 and she sleeps all the time and is very foggy headed And can hardly talk. Doctors are giving my dad the "no hope face" but yet he won't give up. My sisters and I don't know how long she can hold on being so weak. She is too weak for a transplant and is 71 yrs old. She is having horrible leg cramps and bcd pain and is on pain medication that worsens amonia (ammonia) levels and makes her sleep all day therefore she's not eating..And losing muscle mass .it a spiraling downfall... She was very active a year ago. Not a drinker dr isn't sure how her liver got so damaged. A gallbladder removal sent her into this spiral as it shocked her already damaged liver. The pain of waching her health fail is unbearable. I don't know if there is Any hope but you can't lode hope untill their body can't do it anymore. My heArt goes out to all losing a loved one. it's hard to face that reality. Especially when tbey are so loved my mom would give her own life for any one if her children and was an unbelievable mother. It's just not fair. I feel bitter when I see older people abusing their body's and are so healthy when she's so sick. I know that sounds horrible but it's the way you look at things when you go though something like this.

[mustihearthis]

I noticed yellowness in my fiance's eyes when we first got together a year ago.  I kept begging him to see a doctor.  Finally in August he did it, and only then did I learn he was drinking a lot of straight vodka every day.  (I don't drink) He was ready and willing to give it up, and he knew what he was facing.  He was told his liver was completely cirrhotic and he'd need a liver transplant if he made it through the dt's, etc.  He was told he'd be in the hospital about a month.  he made a great fast recovery and was out in a week.  We were told he has to have 6 months of no drinking before any transplant clinic will see him.  He is now in the hospital for his 5th time since August and the doctors are saying they recommend hospice.  He sleeps all the time.  They won';t give him lactulose anymore and I'm not sure why because I think it would make him wake up.  It has always worked before.  We just needed to hang in there till February when he could be seen at a transplant clinic.  It's only three months from now.  The doctors have obviously stopped trying.  It's breaking my heart.  he has done everything to the letter, has been such a good patient.

[robnhen]

I'm sitting here all alone waiting for my sister to die 200 miles away in hospital.
He life has been ravaged by this dreaful illness and now it will cause her death too.  She has lost  most of her friends over the 28+ years of heavy drinking and the personality changes that have ensued.  Even now she is refusing to let her own mother visit her engulfed by some imaginary hatred.  He son is on his way there from London (they haven't seen eachothe for two years as he's been travelling), I just hope she will see him.
My sister has been end stage for a number of years and suffered several bleeds and always bounced back but not this time.  Too much for her body to handle and she's only 49.
I've been reading a lot of your messages with tears for you and your dead or poorly relatives, I think we would all choose the 'going to sleep' option if we could but never truly know what life is going to throw at us.
It's very eay for people to be judgmental especially when you use the word 'alcoholic' but my sister didn't choose this and told me over a year ago that she didn't enjoy the booze at all but had to have it.
I trust the hospital will dose her up that she may slip away without enduring any more loss of dignity .......... Her demise stated this morning by bleeding rectally.
This is so so sad and my thoughts are with all of you who have or love someone with this sad and cruel disease.

[tina_ann76]

The only difference between your story and mine is that my grandmother, whom my uncle lived with, died 4 years previous to his own death. My uncle was found in his home at least a week or more AFTER he had died from the ending stages of liver cirrhosis. I had seen him a month before he died (maybe 1 and 1/2 to 2) and he just kept repeating questions maybe three times (short term memory loss) but what comforted me most was his "kitter story," and his story about me climbing up behind him on his ladder when he painted. Throughout the years before the sickness and disease really took him down, he would tell that to every friend or boy that came around to meet him. But that one day which was the last time I visited him before he was found, he told both those stories 3 times each, and you could see he didn't realize he had just told them. And he would ask where my husband worked a couple or more times. He had isolated himself because he has 7 brothers and everyone knew he was in the end stages, but were in denial that it was too late and the damage already had been done, and all the prayer in the world could not reverse it. (Don't get me wrong - I do believe in miracles - but the disease just flat took him out.) In a way it has been said that it is a selfish disease, and in some ways it is. But we must remember the powerful hold of addiction and the role it plays, along with all the variables in a human life. Genetics, learned behaviors, chance of verbal/physical abuse, and maybe a chemical imbalance of some sort. People are so quick to judge an alcoholic in thinking that they are just partying in up and having a good time in their drinking. I myself am recovered. And I can remember when the first couple drinks were fun... then the third and more after that were to numb myself. Until finally, I knew my first drink was going to alter my relationship with my friends and loved ones, but took it anyway. At times it even became a power struggle - madness is what it is. 8 known and admitted alcoholics on this side of my family alone have suffered - and 7 are recovered. On my mother's side, her biological dad died of liver cirrhosis also and had no relationship with her until he saw her on his death bed. That side of the family has many bipolar sufferers who have self-medicated with drinking or marijuana. As much as I see the consequences of drunk drivers killing or maiming a person for life in a car wreck... I can also see a person in inner turmoil trying to get to that next bottle or fix to numb a pain that rips their soul apart - of course if they had the better judgement in their alcoholism to not get in a car and drive or ask for a driver, therein lies the "choice," albeit a drug or alcohol induced rationality. Baffling. I learned in a rehab program once that if you get at least 8 months of sobriety, you can have a chance at seeing the difference between a sober life and an alcoholic life and have more perspective on choosing which one you want. I finally found the right medicines I needed and feel like a kid again each day when you wake up for Saturday morning cartoons. Excited, fresh, and free. But it takes being sober from your addiction to see the clarity and reach for the hope. I just hate that he went through those final stages of death alone. It is a disease and I would think that he might have wanted someone to hold his hand, but then again the madness had taken his mind completely so maybe he did not know. He was never mean to me and I loved him dearly so this is just my perspective.

[Losingmybestfriend]

Today was the worst day of my life.  I am 28 years old and my sister is 26.  My mom was diagnosed with stage four glioblastoma (brain cancer in January.  Today they told us that she needs to come off her nutrition and I'm so scared and devastated.  My mom has put up such a big fight from the start with brain surgery chemo radiation avastin more chemo and lastly a colostomy.  I just can't let go.  Her and my dad have been married for 37 years.  It's killing me to see my family falling apart.  I can't eat shower or stop crying.  The doctors want us to stop the nutrition because they can't do anything else for her with her cancer.  I know my mom doesn't want to be in pain anymore I just can't come to terms with not having a mom.

[tyosds]

my estranged husband was told that he has a year or so left.. cerrhosis and hep c.. he plans on taking my daughter (22 yo)  to new orleans for a week.. and plans on drinking when hes there.. .. i worry about whats going to happen.. could he go into a coma..or what..

[Alive33]

33 , got told by heptologist you have 5 years to live if you dont have a transplant. havent found out if can get a transplant will do this week.

me.

[tjgcoach]

I took care of my mom in a hospice situation last year, she died but without pain and her family around her.  But there were some long days and nights that I would do again for her if I could.
  Well not her , but my brother came and is now under hospice care here at my house with liver failure /cirrhosis,and he has warned me that his death won't be like our mom's.  He is 61.  I understand that people die , but not having a chance to fully recover from our mom's death, it gets pretty depressing.  When hospice nurses already know you on a first name basis, I guess I wonder if there is a breaking point?  This is the first Christmas that I do not have a tree up or any decorations let alone any shopping.  I know this is very selfish to say, but I am tired.  I feel terrible saying that but it is sadly true.  Will I be next?  amidthedying

[catsoupannie]

Don't know what to say. I am 30 years old and my husband is 34. He has juvenile type diabetes. On April 25, 2011 he was diagnosis with Hepatitis C. He got a call from his Dr. 2 days ago and he said his liver is shutting down. He is expose to start chemo for his hepatitis c but he told him that his liver would not stand up for it. The Dr. gave his a death sentence with with giving him a date. He has had excessive eating, drinking,  and sleeping for about one year now. Even before he was finally diagnosed. From what all I have read on here the only symptoms he has not shown is the yellowing of the skin or throwing up blood. 4 kids total is fixing to not have a father. Scared out of my mind!

[saddaughter199]

Dpizz, your story hit very close to home for me. My mom has been an alcoholic for over 20 years. She is 53 years young. She is refusing to go to the hospital or doctors, but her physical appearance tells my family that her health is deteriotating fast. Within the last 2 months, her legs have become weak and her ankles swollen, making it difficult to walk. She is unable to walk down stairs by herself and she is unable to drive due to her shaking. She has a protruding stomach that makes it look like she is about 5 months pregnant. Her skin is yellow as well. I have spent the last hour reading the stories in this thread to try to get an idea as to how much time my mother may have left. Since she is refusing to see a medical professional we are only assuming by her appearance, her attitude and her history of drinking, that it is liver failure or even possibly cirrosis (cirrhosis) of the liver. I just want to prepare myself, to some extent, for what may come in the upcoming days. My mom is stubborn and says she is ok and nothing is wrong. She is ignoring the physical appearance of her stomach and says she just thinks she needs to go to the bathroom. Her husband told me today that for the first time he had to clean up feces in the bathroom today because she made a mess when she had gone. That tells me that she is losing control of her bodily functions. After reading the stories on here, alot of them share my moms symptoms. I just want her to be comfortable and not in pain. Can anyone tell me from what I am explaining, what you think about how much time my mother may have?

[momo39]

saddaughter199, you may need to call ambulance at some point if your mom does not go to the doctor.  Especially since it sounds like she may be becoming confused.  Your mom likely already has cirrhosis and it is advancing.  She needs to see a doctor and get water pills or other therapy for her swelling.  She will also need to get medication for encephalopathy if she is becoming confused.  For patients with cirrhosis, the time span varies - she could have years left, but she needs to get help.

[Nick818]

Hi I'm currently 25 yrs old and I was just diagnosed with Alpha 1 AntiTrypsin.I was wondering if anyone had any advice on what to expect.Im kinda freaking out cause I'm reading about all the ages and they seem to be in in the dominate range of 50s and 60s.Im to young I think to be dealing with this.I currently lost my father to cancer not affiliated with my illness.I don't know how to break it down to my mother and brother.Its just a time to put more stress upon them.So I was just wondering if anyone had any advice what to expect and how to break it down the easiest way to my family.I know I sound like a weak little puppy but right now I seem it.So sorry guys.Thanks again everyone God Bless
   ***@****.  Feel free to email.

[tammy329]

I am living with an alchlolic whiskey, he is ill at the moment fluid in stomach rash all over his body, another blood test today to see what stage the liver is at his eyes are yellow, docs keep saying when his body goes yellow they will hospitalize him. He is still drinking . I have read your blogs looking for advice on what to except, My heart goes out to you all it is a heart breaking thing to go through for the patient and the family, I wish all of you all the best. My partner is 48.

[pammy35]

Oh I felt sad reading this. I lost my brother November 25th 2011 to liver disease. I witnessed everything over a period of 8 weeks. I feel a sense of sadness all the time and at times feel my life isnt moving forward also. I am aware this is "grief" but it is so hard to comprehend that life goes on and they have gone. I miss him so much, but strangely when he was here I didnt need to miss him, and thats the feeling I hate.. As humans we do take things for granted. I never wish this type of illness on anyone, it is a rollercoaster ups and downs.. sometimes they appear like they will recover and the next day it may be a bad one.. He passed suddenly without warning, this is what can happen with these patients. His heart just stopped beating. :-(

[pammy35]

He needs to go to a liver clinic ASAP. his fluid is building up which means his liver is very bad. Please force him to get help!. This type of death is horrendous and frightening. My brother passed in November from the same illness. The only hope is a liver transplant which can take years!.. Please get help!

[kristy_lee]

Hi Everyone.

My Dad was Diagnosed with Hep C back in 2002, he had a major work place accident in 1985 and had blood transfusions as a result, which is where they beleive the Hep C was from. Dr's told him at the time he had only 5 yrs to live as he was also a fairly heavy drinker and cirriosis was quite bad at that point. he was also later told there was cancer in his liver, this was around 5 yrs back and he has had various operations to try to get rid of it.
its been years but recently (say the last 12 months) He has been getting a Tap to drain the fluid build up every week with anywhere between 5 - 8 litres drained each week.I live in Tasmania and he is living in Sydney. I had him fly down just last week to spend some time with him.
he is looks 9 months pregnant and has started to yellow around the whites of his eyes. he has horrible red like bruising on his arms and legs and has lost so much weight. he is still eating fairly well, drinking also. he has to urinate very often. he is still active and sleep paterns are pretty normal, afternoon nap but I have them too! he has had some of the varices fixed up in the last 6 months. and has tried to stop drinking to get on a transplant list... I know the doctors will know that he has had the occasional drink but he thinks its ok.

from all the things ive read on this site im praying, when the time comes, that he slips into a coma...  he has no one to take care of him and I worry that if he has sudden bleeding or something that he may be left in his home with out help for days.

im scared my dad will die alone. :( I asked him to move here so we can take care of him, sadly he will not budge.

he recently sent me his will and instructions for when the worst happens.
I reently wrote him a letter with all the things I wanted him to know. he has been writing back to me also and im glad i took the first step by writing to him, I ve learned alot about him and why I was raised the way I was.

I guess im just another scared person wanting a little bit of support and maybe someone to listen.
if anyone has any advice or anything I would be so greatful to hear from you.

[tracyjames2012]

my brother passed away 2days ago he was an alcoholic he wouldnt get out the bed he couldnt breath properly had yellow skin mouth ulcers weigh lost wen he got up to go to the toilet he was in there half an hr his girlfriend went in and found him dead on the floor the hospital tryed over an hr to bring him back to life and i think it was threw liver problems he never went to docters or hospital and it hurts me as he was so young

[Dolmance]

I don't know if any of this will help, but here goes - My younger brother died recently at the age of 47 from a variceal bleed, after moving six years ago from his home in LA to Brazil, trying to escape the wreckage of his life caused by chronic alcoholism.  I guess he was suffering from liver damage when he left, but apparently it got worse, as did his drinking in Brazil.  Nobody in our family knew the extent of his illness until the last six months of his life in which he complained of stomach problems, but didn't tell us anything specific.

I feel like he committed suicide by not getting any sort of meaningful treatment.  We only found out the extent of it all after his death.  He was told by his Brazilian doctor that he needed to stop drinking, but he couldn't.  Then after his last visit the doctor told him his liver was shot and there was nothing more to be done, whether he quit drinking or not.  So he continued to drink until a few weeks later he bled out and died in one room apartment with nothing but a thin mattress, while his family in the US had more than enough money to make sure he would have had the best medical treatment available anywhere.

He didn't start drinking until his late 30's and hid the extent of his addiction very well.  And as nobody else in our family is afflicted with alcohol addiction, we weren't able to see the terrible personality changes he'd gone through for what they were - we simply thought he was an obnoxious person whom we dearly loved despite his awful behavior, but who wasn't capable of loving us back.  

In my brother's case, his end state liver disease had a mental component that made proper treatment an impossibility.  I feel that his death was tragic and unnecessarily hard.  

[upset2011]

I lost my mom to this ugly disease, of course, I didn't know how advanced she was because she never really admitted that she was ill with liver failure. The family knew that's what it was, but she never talked about it. Anyway, I want to offer advice.  If there are issues with your sick loved one, please don't fight with them. Let it go. My last conversation with my mom was a fight, and I deeply regret that to this day.
Hernias are common with this disease, and she had one that ruptured, shooting toxins into her bloodstream, and causing brain damage which led to her being in a coma. I was told that she felt nothing, but we sure did. It was a horrible death for us, one where we had to make the call on whether to take her off of life support, or not. When we were told that she had no signs of life in her brain, we made the choice to take her off. Her body died five minutes later.

[kristyk63]

I lost my mother in law last week to liver cirrhosis and I wanted to add my experience to this forum because it was so much different than most of them. Her passing was peaceful and almost painless.She was almost 82 years old and lived with Hep. C for 40 years. Those 40 years were healthy, happy and productive. Almost no one around her knew she had any illness whatsoever. She was a non drinker and developed Hep. C from a blood transfusion.
She first started feeling pain in about December and her abdomen was enlarged. She went to the doctor but he didn't want to drain her abdomen so she continued in pain for a few weeks until she found another doctor who would take the fluid out. Once that was out she was in almost no pain but was very tired and weak. They found a slow moving non aggressive cancer in her liver in mid January but weren't very concerned about it.Meanwhile, the liver continued to cease functioning. She was having her abdomen drained about once a week and she was getting weaker and tireder. She went to the ER and stayed in the hospital for a week. They couldn't do much so they sent her home but she was only home a few days and she was losing weight so fast and getting so much weaker they took her back. She went into the hospital on Friday and they still thought she was going to get better soon. She was never in pain as long as they kept the abdomen drained (which they were doing every other day by now-a few liters a day). On Monday the doctor told the family that her liver was completely failing and she wouldn't be coming home. Arrangements were made for her to move to a care center on Wed. By Wed she was so week she couldn't feed herself and she could only go to the bathroom with a lot of assistance. But she wasn't in pain and she could carry on a conversation easily and got to say goodbye to everyone she loved. She told us everything she wanted at her funeral and what to do with all of her possessions. Thursday she got even weaker, ate very little and couldn't get up to use the restroom. The care center was perfect with morphine whenever she indicated she was getting uncomfortable so she was peaceful up until the end. She was unresponsive Friday morning and passed early FRiday afternoon (less than 2 months from the first sign of pain). Her breathing got labored and then she just stopped breathing and drifted into death slowly and peacefully with her whole family around her.

[kristy_lee]

just an update on my Dad.
had a conferance call with him and the doc today.
was told he will not be put onto the transplant list as the cancers are too many and the likelyhood of reinfection on the new liver would be too high.
they cannot treat his cancers either....blood tests and fluid are not good enough to treat him safely. he had bloods done today,  if there is enough improvement from his last ones they may be able to treat the cancer but it was only two weeks ago that they did his last tests so im guessing they wont... he feels better, no pain and less fluid build up but still not good enough said the doc.
so the question come up - HOW LONG? 6 - 18 months with the rate the cancer is growing.. thats if his liver doent completly fail before then.
he told my sister to tell me not to call him for a few days. I cant imagine the fear and thoughts he must be going through. im scared for him. very scared.
he was all business on the call - matter of fact- and to the point.
im affraid this news will casue him to drink and I feel powerless to prevent that from happening and also torn as to if I have any right to even try to?
after all its his life and he is facing deaths door not me... i wonder if I would be strong in his shoes or not. I dont beleive I could cope.
im hoping that he will choose to sell up and move here so I can look after him. he is far from helpless at the moment but I know that this can change suddenly.

I have cried enough for today. I should suck it up actually cause the road ahead is set to get rougher and there is no way around it.

ill keep posting further updates...

this helps me release some sadness rather than keeping it all inside.. so thanks

[rohit8126]

Lost my mom of Hep C (cirrhosis)... final days due to weakness she also got hip joint fracture... she was bed ridden. Last day she was in terrible pain - no food, fluid, can't clear secretions... even lost her kidneys last day. Doctors told me in advance that the only chance u can take is to try for liver transplant... i had no such big money for that. I was just shedding tears standing next to her. The only thing I could say is that "NO MOM SHOULD EVER HAVE A SON LIKE ME".

[Oshay]

Thanks for the info. My Dad is going through the same thing as we speak...
It's sad, I just wish I knew this was going to happen... I would have spent more time with him the last few years...
I felt alone, I even tried to donate my own kidney... but the surgeon wouldn't even consider.
He went a year after the Hep C, then he was stricken with the cancer that follows. After the ordeal, (the surgery) He was good, well, until his liver started failing... Went to emergency, then 3 weeks in the hospital, then they let him out... only to be back in emergency 1 week later... they didn't admit him this time, just tapped and released.
Now, he just lays on the couch, hasn't moved in a while, and I am starting to realize... this is it for him.

[tracy_beach]

i lost my father last Wednesday to liver failure. he was an alcoholic who just couldn't stop.... and at the very end he hid the symptoms from me... well i knew that he had them.. but didn't know that they meant death was near.... the hospital didn't even tell us... they just said terms like "ammonia levels" "secretions" "encephalitis" "wernicke korsakoff"....we thought that they would bring his ammonia levels down and he would come home again... he died two days after the doctor told us the "diagnosis". i just wish they would have said how little he had left to live, i would have slept at the hospital for his last hours with him... i would have said my goodbyes... instead i just saw his yellow body after he passed... i still don't understand why he was yellow. he wasn't yellow the day before, or even that same day. i hope that if anyone has a loved one that is exhibiting these symptoms and the doctors fail to tell you the seriousness of it, don't leave your loved one's side... because they might not have much longer to live... and i don't want anyone to feel the guilt and regret that i've got inside of me right now. alcoholism is a deadly, deadly disease...

[cynthia1985]

my mother pasted away on friday 3/9/2012 of liver and kidney disease many ppl said all the ways to know when her time has come like her vomiting blood and swelling ....etc and the doc said she was going to be 3 mths she was doing great and out of know where she stop eat after her paracentesis she gave up lasted with pain wednes and thurs and hospice counld'nt handle her pain which i though there service sucked took her to the hospital and died the next day .....she was only 48 and left me the only girl out of 6 bro to take care of her in her last day.....all i can say is i feel :,,,,(

[Dr_Poindexter_Yanksalot]

> My sister the nurse told me to insist that they not
> send him back home, and I kept tellling the MSW's
> that I COULD NOT TAKE CARE OF HIM
> ANYMORE  (plus I was still working as a
> database administrator), so I requested a DNR
> (Do Not Resuscitate).

Wow, a girl DBA!  And you're also the Angel of Death!

And not one of those 'emphay" ones either, a cold, heartless  one!  You told the doctor to pull the plug on your husband while he was still conscious because you were tired of him being sick, and besides, you had work to do on the computer!

I bet you're INTENSE in bed!

SOOOOO...

You on the seek for some intelligent bone yet?  Are you searching and researching, but can't find one that will stand up to hard use?

Well you can stop blowing stupid men in the alley behind the bar now, because you just found a SMART GUY!

Oh, if you cremated that last dude to save money and you keep his ground up skeleton in a box, you'll have to throw that out.  YECCH!

Also, the seed of genius requires a suitable receptacle!   So before I'll put that hose in, you have to hose that thang out.  

And since we need to have the foundations of a lasting relationship, I must ask these penetrating questions:

-- Can you deep throat?  Can you take the guys balls too?  If not, practice makes perfect! ☺

-- Do you have pubic hair?  If not, you'll have to grow it back, but keep it trimmed and pretty.

-- Also, do you like being tied to the furniture with no clothes on?  

-- Do you like being whipped real, real hard?  From the way you treated the last guy, I'd say you do!

Post a photo of yourself (mandatory).  Naked.  And frontal, please, with legs open.  That way if we never get together, then at least I can use your pic, to, you know....
;-)

Now, about me:

I'm a well-respected Doctor of the Crank.
I'm Associate Professor of the Yank.
I took furious notation
During furious masturbation
On the motion and the lotion and the length!

You can pull MY plug every night!

-- Elmer, PhD
In bed, call me "Master Bates"

PS:
Don't worry, I don't have the AIDS.  Nerds are immune to it.  See, you have to have sex before you can catch the AIDS.

PPS:
Did you read where geeky dorks give the best sex to a woman?

I hope so; I've been writing it on everything I see!

[Dr_Poindexter_Yanksalot]

> My sister the nurse told me to insist that they not
> send him back home, and I kept tellling the MSW's
> that I COULD NOT TAKE CARE OF HIM
> ANYMORE  (plus I was still working as a
> database administrator), so I requested a DNR
> (Do Not Resuscitate).

Wow, a girl DBA!  And you're also the Angel of Death!

And not one of those 'emphay" ones either, a cold, heartless  one!  You told the doctor to pull the plug on your husband while he was still conscious because you were tired of him being sick, and besides, you had work to do on the computer!

I bet you're INTENSE in bed!

SOOOOO...

You on the seek for some intelligent bone yet?  Are you searching and researching, but can't find one that will stand up to hard use?

Well you can stop blowing stupid men in the alley behind the bar now, because you just found a SMART GUY!

Oh, if you cremated that last dude to save money and you keep his ground up skeleton in a box, you'll have to throw that out.  YECCH!

Also, the seed of genius requires a suitable receptacle!   So before I'll put that hose in, you have to hose that thang out.  

And since we need to have the foundations of a lasting relationship, I must ask these penetrating questions:

-- Can you deep throat?  Can you take the guys balls too?  If not, practice makes perfect! ☺

-- Do you have pubic hair?  If not, you'll have to grow it back, but keep it trimmed and pretty.

-- Also, do you like being tied to the furniture with no clothes on?  

-- Do you like being whipped real, real hard?  From the way you treated the last guy, I'd say you do!

Post a photo of yourself (mandatory).  Naked.  And frontal, please, with legs open.  That way if we never get together, then at least I can use your pic, to, you know....
;-)

Now, about me:

I'm a well-respected Doctor of the Crank.
I'm Associate Professor of the Yank.
I took furious notation
During furious masturbation
On the motion and the lotion and the length!

You can pull MY plug every night!

-- Elmer, PhD
"Master Bates"

PS:
Don't worry, I don't have the AIDS.  Nerds are immune to it.  See, you have to have sex before you can catch the AIDS.

PPS:
Did you read where geeky dorks give the best sex to a woman?

I hope so; I've been writing it on everything I see!

[LastPsalms]

My fiancee had about 5 yrs of distended stomach due to ascites...he just thought he was eating too much junk! About 2 yrs ago he started getting tired easily (he was a street minister who also bright food to the homeless in their camps and brought furniture to those finally into a place to live-he overworked himself constantly); he always had on & off pain. He ate rich foods & couldn't quit smoking;i made him healthy foods as much as possible. Then last Jan (2011) he got gall stones but refused to have his gall bladder taken out and instead did the lemon juice & olive oil cleanse which helped allot, but he still wouldn't quit eating so much red meat and dairy-he LOVED chocolate milk!, & cocoa crispies with ice cream...then he had another bout of stones...VERY IMPORTANT PROBLEM HERE...he should have cleansed his colon, then his liver, THEN his gall bladder...i think it just dumped more crap into a liver that was already over loaded and failing. More pain, his legs started swelling and then blood in his stools (looked black-by this time he finally started eating much better and eating beets and juicing with beets made it look like blood, so he waited a day before going in...another wrong move. Went to the er (he was always running out of there before hearing all they had to say (he had been told 2 years earlier that there was a mass in his liver...he didn't wait to find out what, and left the hospital, walking home! Anyway, with blood in his stool, they admitted him in the hospital, said that the blood was from bleeding varieces, which they banded.., took fluid off his belly (and at least 5 times after that in the next few months), and gave him a blood transfusion. Then they told us he had liver cancer. That was last July. Sent us to UW hospital for 2nd opinion...they said " there's nothing we can do for you, go home and get your affairs in order." We were all devastated. At this same time my daughter (who shared the same birthday  day as him) was fighting a battle with melanoma, and had just been taken off a clinical trial-BIG hY-she was diagnosed a year earlier when she found out she was pregnant with twins, so my attentions were really pulled in all directions. My other child is DD, and that really maude it hard...she couldn't understand any of it a cried for them allot.) They started him on lactatose, which he HATED, cause you can't get far from the bathroom because of loose stools...sometimes he would forget to take it and he would get confused because without it the ammonia build up in your system and poisons you. He was also on other meds like one for portal hypertension, and had fluids drained a few more times. My daughter suddenly had about 50 tumors appear visable through her skin, & the one in her liver grew to the size of a football and pushed into her bowels keeping them from  Ttttworking-she was admitted into the hospital (leaving out allot of her story), so I was there with her and believing that my fiancee could take care of himself as he said "you need to be with your daughter"...that was true, but he needed me too. This was the point where he had to quit driving himself because the next thing I know, I'm  having to send 911 to get him because he's not making sense over the phone.Then he was admitted...he was so out of it he fought and cussed & swung at all of us so the big nurses tied him down and gave him an enema of lactose, PLEASE GUYS, TAKE YOUR LACTOSE- this was the most humiliating thing he'd ever been thru-he remembered it later-and made a mess they had to clean up as they left him tied like that, naked. It was awful. Finally, after two days, he was almost back in his right mind, and I was becoming exhausted running between his room and my daughters. They were released into my and hospices care and agreed to both have their hospital beds delivered to my daughters apartment so we could all be together. He refused the bed rest and kept calling purple to come drive him around to church meetings & to deliver food! He starting smoking an electronic cigarette (finally). That went on most of the first week. Then he lost his cig & smoked half a real one and immediately got a cough that wouldn't leave, and developed thrush. He started acting incoherent at times & would sit on the edge of the bed for long periods of time trying to decide if he needed to go or not; sometimes it would be too late and then he would be humiliated again. It was Thanksgiving by this time. The day after Thanksgiving he fell in the shower & needed help getting up. My daughter passed away while he was getting his shower. He was devastated. He became almost non-communicating. Hospice came back out with an oxygen tank for him as his levels were low...it would take quite a while for his brain a body to work together-he would just sit and be like half asleep until it did. Guys finally picked him up wheel chair and all and put him in the van because we had held up the service for my daughter over an hour for him to show up, but I knew he wanted to be there, and that my daughter would've wanted him there too. The next day he sat even longer trying to decide if he needed the bathroom (sometimes he even fell asleep sitting on the edge of the bed). Then he started acting like he had something caught in his throat ai them realized I hadn't heard him cough all day...a friend had told me to watch for the thrush growth to get stuck in his throat and cut off his air, so I reached down and couldn't feel anything. Then I realized his oxygen had been hooked up wrong and he hadn't been getting any! (it wasn't hospice). I quickly traced the tubing and connected it right, but by then he could barely breathe. He kept motioning to something in the room. I said "baby don't leave me I love you", and for just a few secounds, he came out of it and said, "I love you too", and then his eyes rolled back in his head. I screamed for help and called 911; we were taking turns with cpr until the aid car arrived-they did everything they could, but it was too late. This was Dec 3, 2011. I had tried to get both he and my daughter to try so many alternative treatments, herbs and natural foods, but they wouldn't take any of it seriously, they didn't  even think they were dying! Didn't like the taste of something, etc...Now I am still devastated, but taking care of my DD daughter who is 28, and my twin granddaughters that just turned two, has helped get me through allot of sadness...but....as I write this I'm sitting next to the hospital bed that has one if the twins in it...she was diagnosed with Leukemia 3 weeks ago. The good new is, she's got  the A.L.L. type, which is "easiest" to curr, and is responding well. The most I can say is I wish I had known what I know now, and I would have started my man on chinese herbs for hepC before it became cirrhosis, and I would have had all of us do body cleanses CORRECTLY-and I would have had that birth mark removed off my daughter when she was young instead of listening to drs. "opinion"...that's where the melanoma started, and I hate it that she ever became a guinea pig and went on that clinical trial....!

[Cynthia75]

Did u ever find any answers? Also, what is going on now? I am in the EXACT same position that u are (or were) in with my Father and I am trying to find out answers about what to expect next as well????
Cynthia

[meg8397]

I am so sorry to hear of your brother's death.  My mom who was only 61, but heavy closet drinker just died a couple weeks ago of end stage liver disease.  She became very jaundice, and we took her into the hospital and within a week she passed.  They did dialysis, but it was only putting a bandaid on everything, as her organs were failing.  SO sad, and it is so painful and I can't stop thinking, 'How could of I have saved her? , why did I not know how bad she was?".  Especially now reading all of these posts, ugg.  I guess I just never imagined it woudl get to that point.  
I miss her so much.  She was the best nana to my 1 year old daughter, and so sad that she can't watch the joy of her life grow up.  

[kazb777]

hi i have just joined,and read your post i have a 30 year old bilary atresia untransplanted she is now in failure,how do you survive this,the hardest walk of my life.i understand if you do not wish to answer.

[kazb777]

Hi there,i cannot give you advice on your condition,i can say you are not a weak puppy,scared yes,at the age of 25 and more worried about putting any more pressure on your family is an incredible testimony of true courage.I can say as a mother,when your child is frightened or hurt mum always wants to know and we cant change circumstances we can hold you and let you know that we will stand beside you every step of the way.
You hang in there
xxxx
Thinking of you
kazb777

[Ghasselman1]

This may not be the right place but I wanted to share my story of what I'm going through

Hi my name is greg and I am 24 years old and I stumbled upon this forum doing a little late night searching cause I couldnt sleep.  I have a rare heart condition sin e I was. On that over time has cause "severe" scaring in my liver causing it to begin to fail

October 2010 start noticing abdominal swelling and decreased oxygen intake so was put on oxygen because my spleen had enlarged so much for backed up blood that it was putting pressure on my chest causing the shortness of breath

April 2011 I started noticing my stools turned tar black like used motor oil and two days later I was admitted into the hospital for vomiting blood at work.  Found I had a few varicies  and a lower gi bleed from backed up blood.  Got banded and refered to mayo clinic.

May 2011 legs and ankles begain to discolor and swell

June 2011 legs begin to bleed randomly out of my pores in my leg causing multiple er visits transfusions and even loss of consciousness once.  At that point even trying to stop the bleeding I would easily soak 2 - 3 body towels in blood since my spleen and my liver had begun to fail my blood became as thin as if I was on cumidin.

July 2011 prescribed ravatio and other mess to help with hypertension and it worked immediately I was able to come off the oxygen and I was feeling great

September 2011. Got right legs great safnus cauterized to help with bleeding

October 2011. Evaluated for a heart and liver transplant but was also told that until I'm in final stages they would be reluctant to give me the transplant because it has never been done successfully on a patient with tricuspid atresia.

November more bleeds in legs and trips to try to get them stopped and sealed off

January. Left leg sealed off to help bleeding

Feb - April my wife started noticing that I was not acting normal I was very delayed with everything I did I would get confused loose. Y train of thought my appetite had dwindled and my conversations were hard to follow and made no sense.

April 2012. Begin coughing up blood chunks.  Great ... So back to mayo we go and found out that now blood has backed up into my lungs and has created collateral vessels that are leaking into my lung
We told the doc about the memory stuff and he told us the toxins aren't being processed efficiently so w
I was per scribed lactalose to help

And now here I am can't sleep but tired all the time running as fast as I can to keep from slowing down dehydrated from the lactalose and sick to my stomach cant really eat much with out consequences  and wondering what's going to "break" next.  I'm still working full time and getting ready to take my family on a Disney cruise so that we can take my daughter (18mo) to a Disney type place so that I can see her there.  I feel like I'm being drug along until I'm not going to be able to survive a ear infection let alone a full blown surgery.  I am scared and trying not to show it, I'm being as positive as I can be with still holding on to reality.

[Ghasselman1]

Please remove my above post I posted it in the wrong place and my apologies and condolences to everyone on here

[kazb777]

I had reacently joined this group and the past few days I have read through many posts,there are so many hurt and broken people on this board,such commitment and courage from all of you who have cared for loved ones or yourself through sickness,This is an incredible journey that overwhelm us with fear and so much pain and confusion.
When my daughter was diag with billary atresia I was told that later in life she may need a transplant so I remained calm believing that everything would be ok,we had many hospitalisations and very scarey times but deep in my heart Ifelt a transplant of her liver would fix everything,because billary atrsia was so rare and the only information i could find was in a libary and was limited 30yrs ago,I remained in the dark for many years.
Her journey took on a very diffferent meaning 15years ago when her liver took on a secondary insult to her liver condition,Iwas shocked that the inflammation in her liver would scar and eventually cause her liver to fail.
She was so well I couldnt see how this was going to happen.and neither did she.
She had always told me she would marry and have children,although drs told her a child may take both of their lives my daughter dismissed what they had said and told me all her children would live,after getting married she became pregnant with her first child and as drs and I braced ourselves she remained confident
Well after having 3 children she taught me so many lessons in this disease,she had such determination to live she truly confused drs by re writng this diseases history
One of the greatest lessons she taught me was never to give up even when things looked scarey.
She would stop me in my tracks and inform me she was going to be ok despite drips hanging off her and the tears in her eyes from pain, and suree enough she would get better.
18 mnths ago I got a call that my daughter was fighting for her life,nothing prepared me for  seeing her on life support and being told that independent of her liver condition she had brain damage,Drs did not know what had cause this and just said she had lost oxgeon to her brain and they did not believe she would ever walk talk,I sat day after day in shock and after 6weeks she opened her eyes,sh stared at me like a newborn at their mother,drs believed this was involentarty movements and showed me scans that showed nearly all of her brain was damaged.I still believed different and the next couple of days she would slowely reach her hand out to me.Drs witnesed this and decided to remove her breathing tube she was now breathing on her own,she was soon moved from icu to a ward,Drs continued to tell us she would need to be placed in a home there was no recovery from this but they would try rehab to try to teach her to walk and talk again but were not hopeful. rehab tried to get her to her feet but she would just  collapse,I think 2 weeks went by and all of a sudden my daughter got to her feet and started to walk and by next day she had our hands and had us running behind her,we were amazed but over the years of her defying drs this suddenly came as no surprise to us.
Although now her liver is in failure and she is battling everyday I wanted to share this with all who are suffering because I know she would want to give hope to those who feel hope is gone although she cant speak anymore I know that this is a precious time for her children and my family,for me personally Im terrified of what is in front of us but I am also afraid that my fear will make me miss the moments of being with her.And writing today has made me realise that the moment that the fear of tommorrow consumes me,I will loose the moment today that I will never hav again.
Mammo you are truly a woman who has picked me up and covered me with your angel wings.and to everyone on the group Iwish you all moments of peace even if its only a moment.
XXXXXXX
kazb777

[DanMills]

Hi..
I came here finding answers. My dad died last May 11, 2012 at 1040 am. He died of Liver cirrhosis.

He was diagnosed last November. He was a heavy drinker.
I am in so much pain, I still accept his death. I just want to share my experience as I believe it can help some of you with all of your questions.

From the time we found out about my dad's disease, I tried to find different alternatives. We changed his lifestyle. He cooperated for the first two months and we did see some good changes in his attitude. He was no longer depressed and he found a new hope. However eversince he had the fall, he broke his lower back, he went into a depressive state.

I love my dad dearly and everything seems so surreal still.

My dad was confined for 5days in the hospital before he took his last breath.

It is a very painful experience. I have seen and heard everything before he went to sleep and never woke up.

I miss him so much.
He lived for only 6 months after being diagnosed.

[soccerbudd]

Hi everyone -

I just lost my cousin yesterday (May 13th, 2012).  He died due to cirrhosis of the liver due to several alcoholism.  I was close to my cousin emotionally, but separated by distance.  

We knew he had been drinking over the past several years, as he began to withdraw from the family and always hung around people who were big "partiers".  We only saw my cousin about once or twice a year, and had noticed he constantly reaked of alcohol.  I had hoped it was just a bad cologne, but the harsh realization was that we was becoming an alcoholic.  Unfortunately, we had no idea how bad he really was.  

Over the past few years, he was repeatedly arrested for drunk driving and driving without a license.  Then, he had his first (known) stay at a hospital about a year ago.  He was close to my work, so I visited him over the few days he was there.  He was slightly jaundiced, but okay overall.  I knew it was due to his drinking.  I really hoped he would get the sign and stop, but that hope was quickly dashed as he continued to get in trouble for drunk driving.  He was in and out of jail, but was eventually able to get a job, an apartment and was doing well.  Unfortunately, he started drinking again and ended up back in the hospital this past March.  

It was that hospital stay where they told him he would need a new liver in order to survive.  Knowing he would not be eligible for a transplant unless he was sober for six months, he decided to stop drinking, joined AA and was very happy with his progress.  Unfortunately, he did too little too late.  He could no longer eat and had to make frequent trips to the hopital to have liters and liters of fluid drained from his abdomen.  He also took a wide variety of OTC drugs to help with gas, constipation, sore throat, and other issues.  I recently learned he had to have his esophogas closed up a few times as he was beginning to hemorrhage.  

My cousin was constantly nauseous and was vomiting blood, was unable to eat and suffered from severe pain in his abdomen.  He became weaker and weaker, and eventually was unable to answer his phone or even text as he was too lethargic.  

He finally called our grandmother on May 10th to say he didn't feel good and needed to go to the hospital.  When my grandma saw him, she said he was the color of gold and was VERY skinny except for his stomach.  The hospital basically said there was nothing they could do for him except make him comfortable.  I visited him on Friday, May 11th, and he was only barely coherent.  He could answer basic questions, but was easily confused and acted as if he couldn't hear.  He just wanted to sleep.

We went back to visit that night as the doctors said he probably wouldn't last until morning, and he was becoming agitated and biligerent to the staff.  I can only think his brain was not functioning properly and was causing the violent tendencies.  He eventually fell asleep, but would occasionally respond when family members would talk to him.

Throughout the hospital stay, his BP continued to drop, though his heart rate and blood/oxygen counts remained strong.  At 35 years old, his organs was solid...all except his liver and kidneys.  On Saturday, my cousin pretty much entered into a comatose state and never really woke up.  While he did open his eyes on occasion, there were only blank stares.  He slept soundly and snored, though his appearance became even more disturbing as his mouth and nose had begun to hemorrhage.  Between his breaths he would let out a few coughs as his lungs had begun to fill with fluids, but they were never productive coughs.  

The nurses and doctors said he could go at any time, but my cousin held on.  We decided to leave and come back as soon as anything changed, as he dad stayed by his side and said he would call us.  Approximately 4 hours later, I received a call from his dad informing me that my cousin had passed away.  

I didn't probe my uncle for details, but later learned my cousin did not go as peacefully as I would have hoped.  Since my cousin's liver and kidneys had failed, his body continued to retain toxic fluids.  While his mind may not have been 100% there, the fact that his blood could no longer clot basically meant his lungs were slowly filling with blood and fluids.  After we left, his coughing apparently became more forceful, and eventually required both the nurses and his dad to help keep my cousin clean.

All I'll say is that my uncle commented that he will have nightmares for the rest of his life about how his son left this world.

Part of me is relieved my cousin no longer has to suffer, but I am determined to use his death as an opportunity to teach other about what alcoholism can do.

It's a very selfish addiction, and has left us trying to piece together the money for his burial and to work out his affairs.  He knew he was dying and kept it from his family.  However, his friends enabled him and did nothing to help him get better.  

Please, if you have a friend or family member who drinks too much, or if you are struggling with alcohol abuse, seek help.  Tell someone.  Do something.  Dying from cirrohosis of the liver is the most disturbing thing I've witnessed, and it will be with me forever.  I'm grateful I did not have to witness the horrible instant when he died, however, I feel guilty his father had to bear that burden on his own.

Thanks for sticking with me through my long post, but I needed to share my cousin's story.

Karla

[DanMills]

I can relate to your situation.

Its nice to know that someone out there has experienced it too.

Its hard to lose a loved one. especially is its your father

[lonewolf12]

Its May 27th 2012..My family just buried my eldest sister 56yo on Thursday she passed away on Monday of last week...To begin I have or had 3 brothers an four sister an my mom an dad..We were always a close nit family Love an helped each other any chance we had..My moms house was filled EVERY Sunday like  a reunioun was happening but it was Just another Sunday dinner at mas as far as we were concerned..Never really discussed or thought about Death..My sister Val of 52 years of age had Breast cancer an never told anyone..She was having fluids drained from her stomach twice a week without us knowing I mean 10-14 Liters at a time..We found out three days before she died that she had Brest cancer an it spread to her liver..We all gathered to the hospital an watched her pass away..I thought id cry until I couldnt cry anymore...At same time my younger brother was diagonoised with esopagial cancer an given 2 months to live He fought very hard a couragious an went from a stout 170 pounds 5"6 to under 80 pounds,,We all gathered at his house me an my older brother sat next to his bed with tube in one hand an syringe in other an shot mophine into the tube to help his pain Hospice came an told us what to do to help him threw this..He died in front of me an I balled like a baby an fell onto him begging hi not to go...Then six months later my MOM the Love of my Life couldnt breath she had copd an they took her to hospital an they said Nothing they could do except let her die..I was adiment that NO!!! She cant die!! I wont let her..My family decided it best to let her go even against my wishes an that infuriated meWe all one at a time walked into the hospital room an said our goodbyes an It almost killed me saying good bye to my Mom BUt the majority ruled over me an that was the last time I got to kiss my mom an tell her I love her..Well that was a sister in Aug 08 an my younger brother in June 09 an my mom One nite before her 77th birthday Oct 31 Halloween night she passed away An Then My oldest sister was diagnosed with rectual cancer an they did an operation an she began Chemo an traveled to John Hopkins for months at a time an we just knew she was gonna beat this,,Well her liver started failing an they rushed her back an put stints in her liver to help the flow an thaey kept getting infected an they replaced them over an over an over,,They sent her home saying Nothing they could do for her ..That was April..She went down hill every day..She quit answering my texts that we did every day for years an then not answer the phone an not eating I went to see her an she was in bed an never got out anymore..I seen her again Saturday may 21nd ended up being the last time we would see each other because she passed away Monday Morning an we Buried her Thursday May 24..IDK what has happened All I know is Im Numb an cant even get emotional anymore..Im Lost an dont know who I am anymore or why im here..I use to beleive in God an now IDK what to beleive to put this on my family 4 in 4 short years...Whats Next?? Anyone??