End Stage Liver Cirrhosis PLEASE, WHAT SHOULD I EXPECT?!?!

My sister has End Stage Liver Disease caused by alcoholism. She just turned 37. She has seizures, edema, jaundice, extreme fatigue, personality changes and short term memory loss. Her most recent labs show she is in liver failure and kidney failure. She continues to drink, and was recently hospitalized with high ammonia levels. She refuses dialysis.

Please, I am in despair! She says she is in a lot of pain! I am completely heartbroken.

Post Edited (DMB#1fan) : 9/6/2015 12:30:11 PM (GMT-6)

Best thing to do is take care of yourself at this point. Caregivers particularly in situations such as yours need to be observant more than anything else, Honestly not much else you can do. Addiction complicates treatment of liver disease. The addiction will determine if she lives or dies. She doesn't have the luxury of having both alcohol and a chance of treatment for liver disease. Livers and medical treatment are costly in terms of time, money and pure lack of resources (Livers). Her basic needs will be treated if she stays sober but until the addiction is addressed to the satisfaction of her doctors (usually 6 months sobriety verified) she will hover at deaths door and or die eventually. Six months is forever when you live in pain, sickness and still no guarantee of making it. A bitter pill for anyone much less a addict. It comes down to her ability to fight against the great odds of death. Accepting she may die but be willing to fight to the end regardless. Do what is required and accept a potentially new way of living if she makes the first leg of the journey.

Ziff

My partner was diagnosed with cirrhosis in 2003. He was told he could live 15 years with cirrrhosis with a clean life style...eating well and NO drinking. He chose not to do that and was at death's door by 2010. Still drinking. When he went to the Hepatologist they gave him 3 months, told us to put his affairs in order. And we did.

He did one other thing. He QUIT. That doc scared him sober! He also went to AA 3 - 4 days a week....or I drove him, he could not drive, prepare a meal, organize his meds, find the toilet many days. He was really bad.

But he got a little better sober, well enough to last the 6 months of documented sobriety and qualified for transplant. He is post TP now, since May 1, 2011.

He had Hep C also and was treated in 2014. So now he is alchol free, Hep C free, and has a new liver.

And is so lucky to be alive.

It can turn out this way. He has to want to and the stars have to line up.

Mama Lama

Listen to Ziff, he's been there...

My mothers symptoms started off with extreme fatigue and weight loss. This was in June 2015. We put it down to menopause. Then she started developing the large belly. We thought maybe she was developing a gluten intolerance as I have one. By Christmas she looked like she was pregnant with triplets. She couldn't eat, couldn't sleep, would constantly vomit, had constant nose bleeds, spider veins all over her chest and had a bad outbreak of acne. In January 2016 her skin was jaundice and she was very slow and confused however she had quit drinking so every other symptom had disappeared. Well when she finally went in for tests. They took one look at her and told us it was end stage cirrhosis. they instantly admitted her to hospital to drain 10 litres of fluid. Over the next month we were given good news and bad news non stop. She had constant draining, albumin and fluid tablets that resulted in complete kidney failure. I was told she would die that night but she pulled through! All the sudden her kidneys were perfect and her liver had signs of function! Then it went down hill again very quickly. We were told on the 26th of February that it was advanced end stage and she had days if not weeks to live. She had developed fluid in her lungs and couldn't breathe or move. The next day she had picked up enough for them to tell us she could survive long enough for a transplant! Unfortunately that didn't happen and on the 1st of March she passed away. There were a million and one complications and I was with her in the hospital every second of the day for that whole month. Don't let liver failure get to this point guys. Once you start getting signs you think are odd GO GET CHECKED. once you've developed ascites and jaundice you've checked your death notice unless you sober up long enough to get a transplant. Unfortunately my mums body had taken a beating from 4 different causes of cirrhosis so she wasn't fortunate enough to get on the list but if your cirrhosis is only alcohol related and you have the chance to be on that list, DO IT. liver failure is the most painful, debilitating, humiliating and exhausting disease imaginable and I wouldn't wish the pain my family and mother especially experienced on my worst enemy.
Feel free to send me a message if you have any worries or concerns about yourself or someone close to you. I experiwnxed the process first hand (I was even there for her tummy taps and vareices bandings) and I can give you advice on whay to expect or what to do with the diagnosis. Please never be afraid to get help!