Hi everyone my name is Mehran and my dad is battling with ESLD right now. I'm 30 and my dad is 63. He was diagnosed with Cirrhosis caused by Sarcoidosis in 2007. At that time he only had varisces and had to get them banded every couple of months. about
7 or 8 months ago he started developing ascites which got worse and worse and now he gets drained every week. We have rushed him to the ER 5 times due to his high ammonia levels (HE), 3 of which happened in the last 5 weeks. He has lost so much muscle mass and is very thin and weak right now. He is also diabetic.
At first I was worried about
his malnutrition and wanted him to eat more protein. This lead to the first HE episode. He was prescribed rifaximin only and that worked for a while but eventually he ended up back in the hospital. Now he is taking lactulose and rifaximin together. 30mL + 1 pill (morning and night). And now try and keep him on a vegetable/grain only protein source diet (he was eating red meat before even though I told him not to!) Things were going well with that for a week but then he was hospitalized 3 days ago because his sodium levels were low (119). Probably this is because of the laxatives and My dad hasn't been really eating sodium at all because we were told to limit it to prevent ascites as much as we could. Now we are being told to give him 2g of sodium a day and hopefully this helps. This is a nutritional balancing act and it has been rough.
We are working to get him on the transplant list. We have Kaiser insurance and we went through all the tests for the Kaiser transplant board to approve his case. But here in los angeles UCLA will be doing the surgery and have their own process. We have only 3 more appointments to goto for them to have all the information they need to make their final decision(which I have been told they approve 90% of what kaiser approves because they work so closely together). We have missed these 3 appointments 2 times already due to high ammonia episodes :( Now the next time we can get an appointment won't be for atleast 2 weeks out. I am praying we can just get these done and get him on the list. It's always on my mind.
When Kaiser approved his case about
a month ago his MELD was 18. He also has a single liver tumor that is 3.5mm and we have to do treatment to keep it under 5mm for some criteria for the transplant. UCLA told me that in los angeles people don't get liver offers until their MELD is 30+. She said high 20's(does this mean 26-29?) for patients with tumors that can file a tumor exception.
There so much more I want to type about
what is going on but I just wanted to get some of this out and on here to people that actually understand what we're going through. My mom and I take care of my dad. I don't live here at home but I'm going to be staying here starting next week to take care of my dad while my mom is not here (i work graveyard and she doesn't). I love my dad so much and it's been real hard for me to see a man that was always big and strong and so witty and cool become so weak, frail, and confused. He is a fighter and I know he is doing the best he can.
I'm so glad I found this forum
Post Edited (Mehran) : 11/14/2012 1:19:09 PM (GMT-7)