Alcohol-Induced Liver Failure

[mrmerrbs]

My uncle is 42 years old and has been drinking excessively for about twenty-five years. Like most alcoholics, he has had some periods of sobriety. About six weeks ago, two weeks into another attempt to get sober, he was found on his bathroom floor, jaundice and unconscious. He was in the hospital for about a month, and I am unsure of what care he received. I know he had a lot of tests done, but the doctors didn't know what to do. He was also on Percocet for arthritis which could have contributed to the liver damage. He remained jaundice for that period of time, and then his body began to swell. He also became very incoherent, unsure of what day it was, claiming people were coming to visit him (Just friends and family who in reality had no idea he was in the hospital). The doctors said that he was in acute liver failure and without a transplant it wasn't looking good. They suspected hepatitus c or chirrosis but ended up ruling both out. The hospital ended up releasing him into hospice care, saying there was nothing more they could do as his kidneys had started to fail as well.

He stayed in about the same condition in hospice, receiving diuretics to reduce the swelling by releasing the excess fluid (And the swelling was actually going down, he was less jaundice). Not long into his stay, he actually began to improve, up until last Thursday. He started taking a turn for the worse, the jaundice still there, the swelling returning.

I've been listening to a lot of people telling me different things. Some say he doesn't have long, some hope for a miracle. I'm not a miracle type of person, but I don't like unanswered questions. Obviously it was the alcohol, but to see it suddenly catch up with him like this still took us all by surprise. It bothers me, not knowing exactly what's wrong, not being able to do anything. Lately, he's breaking my grandmother's heart by constantly saying he wants to go home....basically to die.

I'm not sure what hospice entails exactly either. Some say he's not being treated because they've given up on him but I don't believe hospice exactly gives up on people, just makes them more comfortable rather than tries to save their lives.

My main question is, based on this information, can anyone tell me around how much longer he has to live? I've done some research, but the answers I get pertain to the patient getting a liver transplant, which he can't get. Everyone keeps telling me wait and see, take it one day at a time...I just need a ballpark figure or something. Everytime the phone rings I'm afraid it's someone telling me he has died. I'm basically on the edge of my seat, just waiting. And I hate it...

[jml1986]

Sadly most places will not give you information without the patients consent. I still say that if they called hospice in there has to be something more then what you have been told. If I were you, I would ask your uncle to give you permission so that you can make sure he is getting the best care possible. I never asked, but is your uncle still drinking? One thing I learned with my uncle is that while the liver does not usually regenerate itself with cirrhosis, it can sustain itself if the person does not have all the other problems that go along with the cirrhosis. I think the more you find out from his doctors or hospice, the better you will know what to expect next.

[mrmerrbs]

He does not currently have medical insurance, he's been unemployed for the last two years...My grandparents are taking care of basically everything.

I also wonder why the hospital basically gave up on him so soon...(there had to be something they could do)I think I will have to call his hospice, although I'm not sure if they will release any information to me. I feel somewhat helpless. I would ask my grandparents, but talking about it too in depth makes my grandmother very upset so I try not to discuss it too much.

Thank you everyone though for responding, I greatly appreciate it.

[BANDIDA]

My brother 51 went thru almost exactly what you describe. He needed to be drained almost 3 times per wk.  He was also told he needed a transplant but by the grace of God he is still alive today not the same as before weaker but alive. I do not know what meds he takes because we don't speak (his choice). I think he did loose a bit of his mind but still a BUTTHEAD. My Dad says he does not drink anymore hope that is true. Guess all you can do now is pray and hope that his liver tries to regenerate enough to keep him in you life for as long as possible. I pray all goes well for you and especially for him. By the way this all happened about 2 yrs ago so that says something right?

[jml1986]

  There is no way to tell how long he has if the doctors he see are not telling him ,not to mention, hospice can not be called in unless a doctor has determined that he is terminal from some type of health issue. That leaves me to believe that he has been told what he is dying from. If not, then I do not understand why he has not seeked a second opinion.
  Next let me say that with cirrhosis generally comes with several other health issues. Hep C, diabetis, kidney failure and even cancer are very common with people who have cirrhosis.
  I lost my uncle a couple of months ago and I can say that he should have been gone years before he actually died. He basically had what I call a 15 year death. It was very difficult to watch someone go through that. His finally day was the only day he ever looked juandice. Until them it was years of having fluid drained and having one health issue after another. The day he died was no differant then any other day. He was out doing his usual chores when all of the sudden he started coughing up blood. By the time we got to the hospital he was the color of a banana. We stood by his side for the next 11 hours. He was able to talk and knew everyone for 10 of the hours, but slipped into a coma the last hour. From there it was us standing around him watching as his breathe slowed until it stopped. This is a terrible and painful disease.

[Grace724]

Not being doctors, nor knowing results of his tests, diagnosis, liver enzyme numbers, etc. there's really no way any of us can tell you how long your uncle has. I personally find it hard to believe that they were not able to come to a conclusion about his condition and then decided to involve hospice. Hospice is in my experience only called in when there is no hope.Their purpose is to be there for the family in the final days and to help with meds to insure the patient is as comfortable as possible.

Not having a diagnosis and hearing that your uncle improved for a bitmakes me wonder if he does indeed have HepC with cirrhosis complications or just one or the other. The symptoms you describe sound oh so familiar. My husband has both HepC and cirrhosis. You're right that your uncle is not eligible for a liver transplant because of his drinking. If I am not mistaken a person needs to be alcohol free for one year in order to be placed on the list. So unless his liver failure has progressed to the very end stages I'm not sure why the doctors are not treating him. His confusion and hallucinations make me believe he may be suffering with Hepatic Encephalopathy and that can be controlled for the most part with Lactulose to control the amount of ammonia in his body.

Let me ask you this...does your uncle have medical insurance? Does your uncle have a wife or children? I'm just wondering who is making medical decisions for him and advocating on his behalf? That person needs to seek out a second opinion or at least get some straight answers from the doctors who treated him to find out the results of all tests and get copies. Often I use the copies of my husbands test results to do my own research in an effort to better understand what's happening with his body. If by chance he has no medical ins. I wonder if this is why there is no follow up? I hate to say that because in my opinion all human beings should be treated equally but we all know that doesn't always happen.

I'd really urge whoever is your uncles closest relative (wife, child, mother, sibling) get proactive and seek out a second opinion and some clear and precise answers as to your uncle's condition. If he has no wife or children he may need to give someone else medical power of attorney so they can get information from the doctors. But I'd do something in order to better understand exactly what is going on with your uncle and what to expect in the coming days.

I'd also talk to the hospice folks. Especially the ones directly involved with your uncle. In the case of my father in law who was in his final days with cancer of the esophagus his hospice care takers were in direct contact with his physician and knew all the details of his condition and were able to call his doctor as needed. The hospice person maybe able to answer many of your questions.

Hope some of this helps.

~Grace