I just found the site and have had some comfort in reading all the posts. I was amazed that others are living the same life I am. My name is Samantha, I am 26, newly married.... and now the primary care giver to my father who is in the end stage of cirrhosis. My husband and I moved to Las Vegas a year ago, I came back to New Jersey in October for a show I was doing. My father was diagnosed in November and we have been here ever since.
After a lot of research, tons of doctor visits, and 6 parasentisis we got an appointment for UNDMJ transplant evaluation. One week before his appointment we brought him to the local hospital for severe encephalopathy. After being there a couple of days he was transferred to UNDMJ. In the middle of the evaluation process he got an infection and ended up in ICU on a respirator and feeding tube for 12 days.(the longest 12 days of my life) We were told that this was the end of the line... to all our amazement he pulled through. He was there for 5 weeks total and just recently sent to a sub acute facility to work on physical therapy. We spent 4 days there and then sent to another hospital for another parasentisis. That turned into another 6 day stay and now just sent back to the sub acute physicality again.
This past week I got the news that UMDNJ will not put him on the list due to cardiac issues. Of course we are all devastated, and I have not shared this with my father yet. He has a fairly good mind set right now. My brothers and I have sent his 400 page chart along with his films to numerous different hospital in NYC and Penn. We do not want to put him through this ordeal again if they won't put him on the list, but we haven't given up yet.
I remain very strong on the outside... but inside I am a mess. I feel better in knowing I am not alone. I am so very proud of my father for his 9 months sober. His sickness has taken over all our lives. To watch him in so much pain is so heart breaking. I am sorry for all the rambling. Maybe now joining this site will help my head be a bit more clear. Thank you for listening. I hope I will get to know some of you. Sending you all warm thoughts!
P.S. Sorry for spelling issues... I just don't have the energy to correct.