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Avatar universal

Liver Failure and cirrhosis death, anyone go through this?

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

Avatar universal
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.
Avatar universal
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...

Avatar universal
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
Avatar universal
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~!
Avatar universal
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
Avatar universal
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?
Avatar universal
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
  
Avatar universal
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  
Avatar universal
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!
Avatar universal
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.  
Avatar universal
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.
Avatar universal
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.
Avatar universal
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                  
Avatar universal
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
Avatar universal
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.
Avatar universal
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
Avatar universal
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.
Avatar universal
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.
296025 tn?1233260319
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!!
332074 tn?1229564125
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.
Avatar universal
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
332074 tn?1229564125
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.
Avatar universal
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
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