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

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DMB#1fan
New Member


Date Joined Sep 2015
Total Posts : 2
   Posted 9/6/2015 12:27 PM (GMT -6)   
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)


themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 9/6/2015 3:08 PM (GMT -6)   
Welcome to the Hep forum, DMB. We are those with liver disease of all sorts, and those who love them. I am sorry your sister has ESLD.

My husband, themister, also has ESLD. He had Hep C for decades before being diagnosed in 2005. By the time testing was done , he had stage 4 cirrhosis. He treated twice and was cured the 2nd time. However, he needs a transplant and has been on the transplant list since 2013.

Alanon is a great support for families of alcoholics. Here is the link for their site. www.al-anon.org/

I am going to post a link to Ziff's thread. Ziff has done amazingly well at surviving with alcoholic cirrhosis. I think you will find this helpful, and encouraging.www.healingwell.com/community/default.aspx?f=25&m=3293465


I don't know if your have been with your sister when she has HE. I will give you a link to a documentary that shows how HE affects one with HE. www.hesback.com/

Is your sister alone or does she live with family? With HE, decision making and risky behavior can be really challenging for her, and everyone around her. However, she has seizures and can slip into a coma if she is not watched closely. My husband also had seizure from HE. It only happened once, and was caused from a new medication. Know many meds can make HE worse. Benzo's pain meds, sleep meds, and anti-depressants. Even if she took this in the past with no problem, things will be different with HE. I hope she takes lactulose and Xifaxan .

Know you can not fix your sister, nor make her want to live. ESLD is a horrible disease, and some simply do not wish to stop drinking. Some don't want to have a transplant. It is ultimately, up to your sister. I hope you are able to find peace, either way. Take good care of yourself as you walk down this road. It can be long and difficult. Again, know you are welcome here. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2071
   Posted 9/6/2015 4:02 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

DMB#1fan
New Member


Date Joined Sep 2015
Total Posts : 2
   Posted 9/7/2015 4:23 PM (GMT -6)   
Apparently the doctors have given her 1-3 years, but she's drinking at least, if not more than, a 5th of vodka per day. I'm scared that the reality of it is, more like 0-3 months to live going down such a path as she is taking.

Post Edited (DMB#1fan) : 9/7/2015 4:46:59 PM (GMT-6)


MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 9/7/2015 4:54 PM (GMT -6)   
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
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2071
   Posted 9/7/2015 7:04 PM (GMT -6)   
Can't imagine how her doctors put out those numbers. Most of us that reach the point that medical intervention becomes imperative are given the three month speech. Never thought much about this till now but perhaps 1-3 years is possible. Trouble is, One to three years gives a addict a lot of room to look at it more nonchalantly. Hard to say what might have been, but I'd hazard to guess if I wasn't so ill and went into that coma that I'd went back to drinking again. Surely would have if my symptoms came and went quickly and I heard 1-3 years.

You could die from lightning strike in that time frame and that's how I would have looked at it. "No, He didn't feel a thing when he passed after that lightning hit em", He was drunker than a barrel of monkeys rolling down Mt. Everest". Old saw bones (Doctor) tells my mother. We drunks/druggies tend to shrug off warnings if there is no imperative consequences. Hence it's better she hits the wall (which she obviously hasn't). Then deals with the real sickness of the disease understanding that it's life or death, No jokes. It ain't going to disappear tomorrow with a hangover.

I rarely engage in this forum anymore. Not because I don't want to help, It's because dealing with active drunks and caregivers who often enable them is like "wrestling a pig" to coin a phrase. It's tiresome and useless, In the end I only find myself feeling dirty. I do still checkin and see if there is someone with a glimmer of fight and wants a chance of a new life. Otherwise I'm silent. I saw your post and would like to offer a hand. Not so much you but your sister. Ask her to join the forum.

Ziff

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 9/8/2015 5:45 PM (GMT -6)   
Listen to Ziff, he's been there...
nullum beneficium impunitum...

Angie1953
Veteran Member


Date Joined Jul 2011
Total Posts : 937
   Posted 9/25/2015 10:57 AM (GMT -6)   
Ziff and David...
Good to see you are both still here, giving the words of wisdom that so often was helpful to me as a caregiver. Thanks for all the support for I and hubby as we traveled the Hep C path.
Angie53
Widow of Hep C Hubby
Passed 2/2013

1/3/2016
New Member


Date Joined Mar 2016
Total Posts : 1
   Posted 3/13/2016 5:44 AM (GMT -6)   
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!

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 3/16/2016 10:31 PM (GMT -6)   
Dear New Member,

Welcome to the Healing Well forum. Like you,I am the loved one of someone with liver disease.

I am so sorry to hear about the rough transition your mother faced with End Stage Liver Disease. And you are so right....it is a terrible final illness. WE faced about the same at our house with my partner, Mike, 5 years ago. BUT, BUT, BUT, he got to the doc one step before your Mom. His docs gave him 90 days to live AND the requirement that he be sober 6 months to get a liver transplant. With their care, many hospitalizations, the albumen etc, he held on and got the surgery May 1, 2011.

I underline every word in your post....FOLKS, go to the doc soon enough. Quit drinking if that is the problem. Don't let it go.

If you want to continue your dicussions here, start a new topic and copy and paste your first post in there. Our members will share their experiences with you.

Again, I am so sorry for your loss.

Hugs,

Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.
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