Diagnosed with End Stage Liver Disease (Alcohol related)

Hi Everyone,

Newbie here! My Sister just underwent hernia surgery and I guess the Dr saw the poor condition of her liver and took a biopsy. The results were ESLD and she was told a transplant is her only option. 

She's been a heavy beer drinker for years (a few bouts with intravinece drug use in the past), she's also been taking various anti depressants for quite a while. Either could be the cause of ESLD, but more than likley it's alcohol related.

She's making an appointment with the liver Dr and I'm going with her. I have no clue what questions to ask the doctor? Nor do I know what to expect as far as her declining health???

Any knowledge, tips, or personal experiences will be sooooo appreciated!

JH 

 

Hi JHawk

 

Here's a couple of suggestions for questions

Is the cirrhosis still compensated or has it started to decompensate? In other words, does she have such complications as ascites or portal hypertension?

Should she be referred to a transplant clinic?

I agree with Connie - has she been tested for hepatitis?

 

Make sure the doctor knows exactly what meds she is taking, the dosage, & how often. Also, he needs to know if she is still drinking alcohol.

 

Keep in mind that if she is still drinking, a transplant clinic will not accept her as a patient. They will not refuse her totally, but she will need to prove to them that she has stopped drinking & is doing something about it, such as going to AA, before they will accept her as a patient.

 

If I can think of anything else, I will post another reply. 

 

My situation is I have chronic HCV, ESLD, decompensated cirrhosis, & I have been referred to a transplant clinic where I am currently on the waiting list.

 

Doug   

Wow!

Thanks for some very good advice and questions to ask the Liver Specialist.

I live in VA and my Sister in IN, she say's she's not drinking?

She takes several medications the ones that I remember are Adivan (sp) and a diurectic (sp), but I believe there's more. I ask her not to take them, but going through detox she feels she has to have them?

Not sure if her liver is compensated or decompensated? She was told and diagnosed with ESLD during a hernia removal surgery. The surgeon was not aware of her alcoholism (nor her family physician) so I can imagine the surgeons surprise seeing her severly damaged liver.

I asked her if she was tested for HepC and she was, but the test was neg.

Thanks again for all the help and support!
JH

Hi,
I am new to this and was amazed to see how many people are going through similiar situations as me. I was feeling so alone. My dad has been a drinker for many, many years. His alcoholism created a lot of hard times for him as well as others in the family. Basically I have been the only one to stick with him trying to help him. From getting him off the streets of homelessness to rehabs (several) to just being there for him, involving him in my life, etc... Unfortunately nothing I did seemed to work. Last December he was diagnosed with end stage liver disease. Something that I wasn't deep down shocked to hear since I had been warning him about this for years. Anyway, he came to live with me in January 2008 after he got out of the hospital. We were told he had to wait 6 months before being able to get on a transplant list. Though he was weak, he was taking his medications and lactolose as prescribed. His appetite was that of a bird but he seemed to be getting a little better day by day. Of course he had to go into the hospital a couple of times to get blood transfusions as his white blood count was very low and his platlets were low as well. April after our regular doctor visit they suggested he go get another transfusion as he was getting low in his counts again. We thought this to be typical for the most part but since april 6th going into the hospital, things have gotten worse. He's been in the hospital now over a month. He's not eatting at all. He's been given a feeding tube through his nose. He's in a state of confusion which the doctors thought the feeding tube would help that because he's having regular bowel movements. He's been given all sorts of tests that don't show why he's still confused like this weeks later. I've been working with the social workers in getting him on the transplant list finally. But now I feel it's all too late. My dad is extremely thin. Almost as if he's wasting away. I ask the doctors what's happening and they don't give any real answers. They want him to be put in a nursing home until the confusion clears up. The problem is I can't find a nursing home that will take him with the feeding tube. He can't have a permanent one placed directly into his stomach due to high risk infection occuring. I feel like my dad is giving up and I just don't know what to do about it. I feel so many emotions. I have tried to help him for years and he didn't listen to me. I feel sad that others (my brothers mostly) never let my dad into their lives. Maybe that would have helped my dad not drink so much and ultimately end up like this? I see him and think this isn't living. He's completely unaware of his surroundings and today thought I was his mother (who's been passed on for the past 12 years). Yet I so desperately wish he could just get the liver transplant and he'd have a chance. Prior to this last visit to the hospital. We'd sit up at night and talk about how this whole liver issue happened. My dad would feel bad and say he wished it never happened. He would also express how he wanted to live and was happier now that he was living with my husband and children as he was so lonely before. I thought things were moving in the right direction and now it seems as if he doesn't have any chance after all. I just wonder how could things go down hill this fast? Why is he so confused, yet there are no real answers for this from the doctors? Is there anything that could be given to him to end this confusion and hopefully get him so he can eat again? I feel so bad about this whole thing. I just don't know how to handle it. One day I'll think I am accepting of it, the next day I am so afraid the end is finally hear and how do I move on?. Anyway, I am glad I was able to see others going through the same thing. Though I certainly don't wish this on anyone but am grateful to know I'm not alone. Thanks!

My sister was a heavy drinker for many years got Hep C from a boyfriend, and it turned into ESLD. Now she is becoming more critical with ascities, varices and is in pain. Her memory is shot, and her balance is off, this has mainly been past two or three months. They have her on lots of diuretics, high blood pressure meds and all. It is disheartening to watch her suffer, and my heart goes out to anyone suffering this dreadful disease or watching someone go through it.

Hello Annette, how are you doing? Hope you are doing fine. Glad that you posted. You have been missed.
As you see we have a lot of new wonderful members......

Have a very Merry Christmas and a Great New Year.........

Thoughts and prayers......

My dad has been a heavy drinker all his life and now has end stage liver failure, fluid retention, pancreatitis, kidney failure, etc.  He quit drinking in May but has started again because he found out that he probably will be at the end of the transplant list and won't live to see a new liver anyway.  He is drinking a LOT again and I'm wondering does anyone know what to expect?