Liver Failure and cirrhosis death, anyone go through this?

[Mary Z]

If you have lost a friend or close relative to liver failure and cirhosis, please share with me the amount of time they had in "end stage". We are trying to get some idea of what to expect....I have posted on the liver forum...but decided to ask here as well. Thank you all for your time!
Mary Z

[mlowe82]

hi, I was just looking online for an answer to basically the question why my dad wasn't offered a liver transplant when we all said we would be donors....this is before he had any other complications. we are currently going through a legal battle as the hospital in question have admitted they screwed up! anger doesn't cut it! basically I read your message in tears...this is identical to my dad we lost in jan this year! your message hit my heart xxx

[fyhghj]

My father died of hep c in 2012. I was 23 years old. I was daddy's girl and adored him. Nothing ever happened until i told dad about it and saw him smile and be so proud of me.

Here we are 3 years later and it feels like yesterday. I will tell you the story.

Dad told us kids when I was 13 that he was diagnosed. My mom sat crying on the couch because her 1st husband died in a car wreck and she was so scarred to re live it.

His blood levels were off, thats all he told us. Dad was very protective and didn't want us to know his suffering or worry.  I remember when he had to take the shots and they made him so miserable. that was the first time he ever yelled at me. later he kissed me and told me he was so sorry for  being so harsh. I was not understanding.

Then he did many natural treatments. He talked to other people that had it. He prayed to God every day. We don't know how he got it. I suspect past drug use, i know he used to be a user before I was around.

Then when I was 15 years old, dad had the "flu". he was sleeping on the couch. i had never seen him so sick. I was away at a friends and mom said he just stood up and passed out. She took him to the hospital. He had to have so many blood transfusions. he was internally bleeding from his liver. We were so scarred. The doctor put a Stint in. We all sat in the room crying and the doctor said "do not be so upset, your dad will be ok right now".

And he was that we knew of. i could see his suffering though. his mouth filed with sours. He was very tired and pale. The last two years he lost a tremendous amount of weight. if we brought it up, he just smiled his dad smile and didn't say a word.

Two weeks before he died, he had internal bleeding again. they fixed him but he barely recovered. i was frightened how he looked like a skeleton in the hospital. yet

[Astchris]

Bless you.  Care givers are Angels and you've earned your wings.  I'm so sorry for your pain.

[Otterfrog53]

My brother is in the final stage of Cirrhosis of the liver due to alcoholism.  He and I were adopted, and his mother was a drug/alcoholic so he was born with fetal alcohol affect and became addicted to alcohol as a teenager when he had his first drink.  He tried to go through treatment but was unsuccessful, felt shame, couldn't quite (was born with the DDT's), and so just tried to isolate himself and hide his addiction.  Kind gentle soul... and now he is in the hospital recovering from a GI bleed... yes, he has the distended stomach, edema in his feet, vomiting and passing blood, confusion and forgetfulness, skin starting to break down, not too yellow yet though.  He thinks he has an ulcer that bled and he will be going home in a day or two, even though he knows that he has cirrhosis.  I think that he is scared, and doesn't have much information, though he tries to hide it.  I"m still waiting for lab work results.  Previously, his primary doctor just wrote him off, told him he would be dead within a year, and sent him home.  I hope that the hospital will do more to help him and us manage his care.  It sounds like this is a miserable way to die. I wish I knew how long he has to live... a year, a few months, a few weeks.  Not too sure what to tell him. I'm his only sibling, and mum and dad have passed on.  This all happened yesterday so I'm trying to gain some perspective on this. He isn't eligible for a transplant because he isn't able to quite drinking as the DDT's would probably kill him, so now he drinks a few beers every day.  I've heard about a partial living transplant where a living donor gives part of their liver and am wondering if I could do that for him.  I want to scoop him up and run away with him to Mexico but I know that he wouldn't want that.  It's hard to know how aggressive to be about his treatment, and how much to just do what he says... sometimes I think that he thinks that he's just "not worth it" which makes me very sad.  Thanks for listening.

[SnKZabel04]

My mother just passed from end stage non alcoholic cirrhosis.  She had the disease for over 30 years starting out as hepatitis.  Up until 3 years ago, she wasn't exhibiting any symptoms to speak of.  Once the symptoms did appear, they were controllable to a degree.  She developed a umbilical hernia last year due to all the ascites.  The doctor and his staff didn't seem to be worried about it, and didn't do anything.  Just "pushed" it back.  She became sick and was rushed to the ER shortly thereafter as the hernia now caused a bowel blockage, and she had to have emergency surgery.  She then developed a blood clot in a horrid hospital ICU here.  This all started the down turn.  She deteriorated greatly within the last year.  Losing weight, the fatigue, constantly have to have the fluids drained, and etc.  I felt helpless.  She did too.  She was a active individual before this disease took over.  She did things for herself.  She no longer could, and it frustrated her to no end.  She wouldn't let me do really anything for her as she was always the strong one.  She did things for herself and dad.  They both were in denial I believe too.  She fractured her pelvis a month ago, and that was the beginning of the end.  Over the month, we had: 3 ER visits, a week in the hospital, 1 1/2 weeks in a nursing home to attempt rehabilitation to get her to walk again, and finally hospice.  In the end, I don't know how much pain she was in.  Her blood pressure tanked, and couldn't be revived.  Her hemoglobin was so low.  They gave us hours.  She ended up lasting 3 1/2 days in hospice.  The alternative was life support and a ventilator.  Sometimes I regret the hospice care.  I sat and watched her die a slow death gasping for air.  No food or water.  This was supposed to be a dignified death keeping her comfortable.  In my eyes, it was inhumane.  She didn't deserve any of this.  Especially that.  If I had to go through it all again, I don't know what I would have done differently.  I do know the health care system here is broken.  Very broken.  It needs fixed someway somehow.  The system isn't the only one at fault.  I also blame the insurance companies that put profit ahead of dignity and compassion.  My only comfort is me being with her when she died and she is no longer in pain or miserable.  She kept hanging on long enough to get to my birthday.  It was obvious.  She died within 5 minutes after midnight on 6/27.  Why she did that, I have no clue.  We bury her tomorrow.  It hurts greatly.          

[karen608]

Husband in end stage liver disease and does not want any hospital just to die at home. Vomiting brown this afternoon and asking to be left alone, if he dies he dies. Hard on me but he said he wants to go home to Jesus and not go on and on with this. Will see what happens next and I tell him I love him. So hard on caregivers. He has do not resescitate order so he just wants to leave this world on his terms.

[karen608]

Husband was not a drinker. He died July 2nd, 2015. A year and a half later his younger brother died of the exact same thing. No drug use, no hepatitis can someone just inherit a tendency to cirrhosis  I don't know.