Ascites diagnosis

Well, I have a diagnosis. Though to me it's confusing and not very helpful. It's called nodular regenerative hyperplasia. The most common cause is damage from using certain medications, especially azothiaprine when it shows up in transplant patients. I have no knowledge of getting azothiaprine but that means very little. There appears to be no treatment except management of symptoms. I do not have varicellular bleeding which appears to be harder to manage. I do have ascites which is currently being managed. I don't know if I should have a different med for portal hypertension.

I had my first transplant in 1998. Cyclosporine was the big new thing, replacing azothiaprine and showing much better survival rates. I know that I took cyclosporine for a little over a year. I had trouble with my gums growing and I hated the extreme hair growth. They changed me to Prograf which was really new at the time. Back then, I was not as informed or curious or something. I know I swallowed a bunch of meds before the transplant. I know I got some stuff in an IV during surgery for immune suppression. They called it something stupid like pre-loading. Even with a living donor, the procedure was to really suppress my immune system in those first few hours. Did I get azothiaprine? Who knows? Back then I didn't ask these things.

Second transplant was in 2012. I had 97% antibodies and had a cadaver donor. I know that I got meds by IV for 4 days after for about 6 hrs/day to deal with the antibodies. At the time, I knew what the med was. I have a lot of trouble with memory these days and don't know what it was. I suspect it was newer than azothiaprine.

In the end, my liver damage could be from a combo of lots of different meds. This is not a common condition. The literature I'm finding about treatment is truly not that informative. I got the diagnosis in a letter from the doc I saw for second opinion. I don't have any follow up appt with hepatology and I haven't heard from them. I just don't even know what to think about this. I'm worried what it really means. I hate that my body reacts so badly to everything. I know I'm preaching to the choir but why does everything have to be so hard.