my husband has alcoholic cirrhosis diagnosed in 2006. He quit drinking in 2007, never to drink since. He was told in 2010 by a Hepatologist that he needed a liver transplant. He was to lose 150 lbs. At that time he had been in the V.A. Hospital here in St Louis with severe encephalopathy. he was told, no salt. We tried that for a few months, wherein his problem of depression and encephalopathy gives him lack of will power. He has been on Lactulose since 2010, Rifaximin, vit d, other meds by dr. Last yr from dec-march off and on he was in and out of VA then Barnes-Jewish Hospital under the care of the Liver transplant team kidney team, and other teams.
At that time his ascites had gone to the pleural space under the lungs, and one lung collapsed. They put a new tube(experimental) in at Barnes, and over time it got infected and nearly killed him with the kidneys also trying to shut down.He was in IcU a week and then Barnes for 2 more weeks. Finally in March they put a TIPS in his liver, a shunt, to stop the fluid for his pleural area and abdomen. Since then, he just got out of the hospital Monday due to his legs weeping from all of the water retention. (He wasn't caring about
his diet again since last March, and wasn't keeping dr appts. :( He wouldn't listen to me when I would say lets go to the ER and get you checked out.
Finally , when the skin started peeling from his legs he said ok. When he went into the hospital his Ammonia was 100, he had lost 105 lbs last winter and put 90 back on. DR's say his brain is so used to being on high ammonia levels that he has learned to function this way. :( His MELD upon entering the hosp. this time was 25. Day of leaving hosp. 29. Frustrating after 1 week in hopital again. What they did for him was use Albumin to pump up his kidneys so they wouldn't fail while pulling off water with Lasix. a fine line to walk.....he had to go for blood work today, and I talked to his liver nurse coodinator. She says they still can do things for him. we are on NO sAlt! He is taking his meds and Lactulose, but he is sleeping most of the time now....not the usual for him! Nurse said get him to the ER if he is worse. WHEN he WON'T GO!!!! I AM GOING CRAZY HERE!!!!!! HE WON'T GO! HE IS TIRED OF HOSPITALS AND THE DISEASE, I KNOW. I am also disabled from severe arthritis and Fibromyalgia and a bad colon.
We had planned to go to Florida for my health and he still wants to if he gets improved enough to go.
He is a stubborn Chekoslavian. lol 3rd generation..he has a long term care policy pd through the university he used to work at, and we are going to check into getting that started. It could be a financial help for us and round the clock nursing, ect.
He is 58, 59 in March, i am 56.
We hoped there would be a good VA hospital in southern Florida and a transplant hospital too. He thinks he may never make it to transplant. He is at 330 right now and they tell us he needs to be at 250 to even think of transplant. I have friends, family, but feel so alone with this.
Our kids are my children and we have grand children, 2-5 yrs old.
He was a bachelor for 20 yrs. We met in 2004 and got married in 2006. He had never had children in is previous marriage. I have even gone to counseling to try and deal with this disease he has. I was widowed previously. My former husband had a massive coronary at a hospital on Dec.30. 2002.
Not a good time of yr for these reasons. I just need someone who knows what we are going through to talk to. please. Sincerely, Pam
Post Edited By Moderator (hep93) : 12/22/2012 10:44:37 AM (GMT-7)