I have been "lurking" on this forum for a few weeks now, and I must say how welcome I feel here already, despite this being my first post. My father has ESLD from alcohol realted cirrhosis. He was diagnosed over a year ago with the cirrhosis, and stopped drinking immediately. He has not had a sip since his doctor told him to quit drinking. He has been in and out of the hospital for the past year, the most recent was 7 weeks over the holidays. He has been shuffled from one hospital to another, in search of becomming listed. This has not happened yet, but we are hopeful. He had TIPS done in October, and came home after surgery doing fine. They could not get the fluid under control, and he found himself back in the hospital getting drained almost weekly. The finally kept chest tube in, and allowed him to go home with my mom, and she drained him once a day. This went on for sometime, until it stopped working. The HE came on in full force after Thanksgiving, and he found himself being transported to a transplant hospital about 2.5 hours away from home. He was there for 3 weeks and told he had to prove he had been sober for 6 months before they would even talk to him about getting listed. They did not take his word (or ours for that matter) that he had not taken a sip in over a year. ( I understand this). However, they told him he had much less than 6 months to live, so he should just go home and die....there was nothing they could do.
Not giving up, we finally moved him to a private hospital who agreed to talk to him about getting listed. He was there for 4 weeks almost, and just got weaker and weaker. Getting him to eat is a super battle every day. The transplant team told him he needs to go home and build up strength, b/c he most likey would not surivive a transplant, even if he was listed. His meld score was in the 20's the entire time he was there. Anyways, they sent him home, and my mother is his primary care taker. They have rented a hospital bed, and a lift chair. He gets out of bed once a day, and goes to his chair for an hour or 2. He sleeps 22 out of 24 hours. His days and night are mixed up. They want to see him back at the transplant hospital every other week to check his MELD score and drain any fluid from his belly and lungs.
My husband, son and I are 5 hours away, but we are going home every other weekend to be with mom and dad, and to give my mom a break. I HATE being this far away, and feeling so helpless. Mom keeps telling me not to come every weekend, and to try and not be consumed by this. My son is 16 months old, and into EVERYTHING! While he is such a point of happiness during all of this, he is also a mess, and trying to climb up my dad's hospital bed, and pull his oxygen out of his nose, and etc. It wears my dad out to watch him. LOL.
He has gone from a 65 year old vibrant, working man, to a shriveled up, sleeping, depressed shell of a man in 8 weeks time. He is battling HE daily, despite taking his Enulose 4 times a day. The biggest battle is trying to get him to eat. Everything tastes bad, and he chokes if he has anything solid. Mom is putting regular food in the food processor to try to get him to eat. He is skin and bones, and has no muscle mass left. His doctor gave him something similar to marinol, but it made him hallucinate terribly, so they quickly took him off of that. If anyone can recommend a "trick" for improving nutrition, PLEASE let me know.
I am here to vent, and share, and just get it out. All of you have been/are going through so much. I am in awe at your grace and attitudes towards life. You all give me hope that no matter what happens, we are not alone. My dad called me after the first hospital told him to go home and die. He told me that he knew it was coming, and though he didn't want to die, he told me that he wasn't scared, and he was not going to concentrate on the bad things. He told me that he had already planned his "service", down to the music and minister. He told me that he was so sorry that he was putting us all through this. He told me how proud he is of me, and my family. He told me to be a good wife and mother to my children. He told me that he did not want me being consumed by all of this. He told me not to cry in front of him b/c he can't stand it. That was only 4 weeks ago. Now he can't stay awake for longer than 5 minutes at a time.
Thanks for listening, and I apologize for the long post. Thanks for sharing all of your stories. God bless all of us.