End-Stage Liver Disease???

[angel_iees]

This is  my situation and I need any answers anyone can give me. I am 25 years old and my mother is 42. She has been a heavy vodka drinker, from what my father has told me, 23 years. From what I seen when I lived with her she was drinking about a pint a day plus coolers, that’s just what I noticed. She started swelling in her stomach and legs about 3 months ago so I begged her to go to the hospital, it took awhile but I guess she got scared because the day she finally said she would go she seen a little blood when she got sick. She was admitted to the hospital for 24 days. While at the hospital she had 25 liters removed from her stomach and she had 30cc’s of fluid removed from around her heart, which they never found out why it was there. They looked for all kinds of cancer and nothing was found. So before she was released she was diagnosed with ascites, end stage liver disease, scleroderma, and she also has raynauds. Hepatitis was never mentioned though. When she came home it seemed like she was worse then when she went. They don’t have her on any fluid restrictions, even though to me her ascites looks very uncomfortable, she is on a low sodium diet and she can get up as tolerated, which isn’t much. I moved in to be a supporting daughter and caretaker, and it is way more then I thought it would be. There are so many unanswered questions. My mother is a size 6 and the day she came home from the hospital her waist was 101cm, I took her to get her stomach drained 7 days after coming home and her waist went down to 90cm, 2 days later it is back up to 98cm and she says she is h

[Kalio1]

I am so sorry you are dealing with all of this. This forum doesnt have a doctor, it is a patient to patient forum but there is a doctor in the Gastroentrology section if you pay a small fee. I think it would be best if you could speak to her doctor, does she have one or are you talking about the doctor at the hospital? If she doesnt have a doctor you can call the hospital and see if you can speak to the doctor who took care of her or see if someone from the hospital might be able to help or point you in the right direction for some help locally. Your Mom is lucky to have such a caring daughter. It sounds like you are doing all you can for her until you meet with the liver specialist. Has she stopped drinking? Obviously that would be key, that she not drink alcohol at all. She needs to take all her meds as the doctor said to and if anything changes you need to call the doctor to let him/her know. Have you spoken to the doctor about all of this? If I was you I would call the doctor and speak to him yourself if you can, he is the one who can help you watch out for problems and help you deal with all that is going on. You could also ask him your questions about her care and what you should do. You also might try the Janis and Friends website, I think they have some info there on ESLD and people who are going through it or going through it with their loved ones. I hope you get some answer soon, take care and please come back if you need to talk. Not many people are here late at night, you might check tomorrow when more people are around, hopefully someone can offer you some assistance. Sorry I am not very helpful but I wanted to offer you some support in this difficult situation you are facing.

[amirtracy]

I'm sorry you have this situation. I went through this with my father a few years ago and i know how hard it is on everyone. I also found his dr's to be very condescending and uninterested in his care since "he brought this on himself" which only made matters worse...
Kalio is absolutely right about not a drop of alcohol which is tough when you're an alcoholic. my father would sneak and drink even tho' he was told it would kill him. it's important to get the ascitis under control and they do have meds that help with that. also to watch out for esophgeal varisces (sp?) which is very dangerous. IF he would've stopped drinking and managed his care he could've lived for a long time with ESLD. everyones situation is different, but if i were you i'd hound her docs to get the answers you need. they can give her something to help w/ the fluid retention. and they need to give you some help as well by telling you the truth. best of luck to you and your mother.