Question on ESLD

Good Morning, I'm new to this today and hoping someone can give me some answers.  This will probably be a long post, but want to give all the background info I can.  My husband is a chronic alcoholic has been in and out of the hospital.  Once it was for bleeding esophageal varicies and the next was alcohol overdose basically.  First time he was only given a 30-40% chance of survival and the second time he was give 4 days, but survived both.  He has been diagnosed with ESLD and I have had him legally comitted twice to no avail.  All he does now is drink and sleep. He gets a small scratch and bleeds very easily and it doesn't stop bleeding like it should, so I know his INR isn't right. Some days he is confused and says I don't tell him things that I did and is getting argumentative when he drinks, which he never did in the past. He has pancreatitus, cihrossis, enlarged spleen, gall stones, diabetes (brought on by the alcoholism), and high blood pressure.  I am battling a relapse with my MS and this isn't very easy for me.   What are the signs that I should be looking for that it is getting worse.  His urine is starting to turn yellow again, but he says that there isn't any bleeding in his stool.  I don't know how much more of this I can handle.  Sorry this isn't written very well.  Thanks for all your help.

Dear Misty River,

Welcome to the forum. We are a group of folks from all over, both patients and caregivers, lovers and friends. We are committed to helping each other deal with liver diseases caused by all sorts of things...Hep C, Liver Cancer, alcholic cirrhosis, Auto Immune Hepatitis, etc.

If you read through old posts, and there are hundreds, you will see that there are folks who find a way to stay well, and folks who pass on. Folks who get transplants and folks who do not, or cannot qualify.

There is a lot of information at the top of the forum, educational material that may help.

My partner, Mike, has Hep C, had HCC liver cancer, and had cirrhosis. He got a transplant 6 months ago after a six month alcohol cessastion program...4-6 days a week at AA. He got so sick he somehow pulled it together and decided to live. In October 2010, the doc told him he had 3 months if he took one more drink!

He is one of the lucky ones who both changed his ways and got into a good program here in Florida.

The symptoms you outline are pretty typical for ESLD. Unfortunately, the progression of the disease is different for everyone. Those affected generally decline bit by bit with the bleeding, hepatic encephalopathy (high ammonia causes changes in mental status), ascites, edema, high blood pressure, even kidney failure.

The prognosis is not good. they call it End Stage Liver Disease for a reason. The liver wiill rebuild itsellf if the organ is basically healthy, but once cirrhotic, it will not. You cannot live long with no liver.

This is a sad time for you and your family. And a terrible time for your husband.

There is one poster here, A. Ziffle, that squeaked by with a renewed committment to clean living and he has returned to the land of the living for several years now...low meld scores, regained weight and strength. There is a chance your husband could have some time...but changes need to be made in time.

Post often, there is a caregivers thread where our caregivers post their feelings and frustrations with this journey.

And ask anything, someone will come along wiht a similar story.

Best, Mama Lama from Florida

Post Edited (MamaLama) : 11/2/2011 1:00:24 PM (GMT-6)

First off alot of questions, but thanks for the posts.  His urine was clear now it is starting to turn dark yellow.  I know his INR isn't right because if he gets scratched he bleeds easily and it is hard to get it to stop bleeding.  I have had him court comitted twice to no avail.  He has said he doesn't want to quit, because it is to hard.  He has been on antibuse and campral for the cravings. He has been to treatment three times and it doesn't do any good.  Not sure of acities, but belly is starting to get swollen, he won't go to the dr because he knows what the dr is going to say. Transplant obviously is out of the question.  I tried to read about the hep c and liver, but really didn't find any answers i was looking for, not that i know what i'm looking for.  He has high blood pressure, cihrossis, pancreatitus, swollen spleen, gall stones (not bad enough to remove), esophageal varicies, (banded many times) can't remember what else. Just getting very very tired and don't want my ms to act up any worse than what it already is. I'm getting angry and just wish someone could tell me how much longer i have to put up with this.

A rest home won't take him because he drinks and you can't drink in rest homes.  I'm thinking about a wet house, if you know what that is, i'm sure you do, but i don't think he will go and so here i am stuck.  Thank God for good friends, if i want to get away for a few days, i go stay with them.  I talked to my dr and he said it could be 5 minutes or 5 years, 5 minutes if his varicies start to bleed, which they have done in the past and the dr gave him a 30-40% chance to live, the second time he was i the hospital, they gave him 4 days if they couldn't get his liver to start functioning properly.  He is 54 year old and has been drinking since he was 13.  His parents were both alcoholics and they both passed.  Moher at 53 and father at i believe 58, it was before i met him.

 

Mistyriver,
So sorry you had to come here because of ESLD. It is not an easy disease to deal with as a spouse. And anger...oh yea...been there. From your posts it seems like you recognize there is very little you can do if he won't quit drinking. My hubby has ESLD and has not expressed much interest in a transplant, so we are playing that waiting game...same one as you. From your posts, even though you know there is not much you can do, sounds like you want to help him (normal). But the reality is, you may just have to relax and let nature take it's course and realize that he gets this choice,...even if it's a bad one or not the one you want for him. As far as the caretaking...yes, it is a crushing amount of work and heartbreaking. If you can't handle it and he won't go to a "wethouse" (and I must admit I have never heard of it), perhaps if he is hospitalized again, they could take him there directly from the hospital.
If he would go to a Dr., they can handle lots of the symptoms with medication. The meds helped my hubby a lot with swelling belly, itching and pain. It also may be likely that he is using the alcohol as a pain killer because he is in pain from the disease. The Dr. will most likely give him meds for the pain. Glad we sought med care (and my hubby held off until he was very very sick)and he got the meds to help him (and me) through this. Here on this forum most of us know what it's like to have this disease or care for someone who does, please keep posting. I promise it will help you through this really rough time. And if you want to read about my and others anger (common) see prior posts..we had quite an extended discussion. For me the HE (crazies) are the worse to deal with. We care about you. Post anytime.
Angie1953