Liver Failure and cirrhosis death, anyone go through this?

[Mary Z]

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 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 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 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 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.