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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.
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