Hi everyone. I was diagnosed with portosinusoidal vascular disease after a horrible decompensation event in early November of last year. I had been treated for rapid onset jaundice since August, and had been put in the hospital once before that for testing that didn't really yield much in the way of results. Long story short, I had a variceal bleed and nearly bled out, requiring 6 pints of blood and discussions about whether or not I had a DNR; from what I read after the fact on MyChart (I was intubated and sedated for a week, no memory whatsoever) they just worked under the assumption I had cirrhosis. I had developed serious edema and was unable to walk for two months after that on top of all the genetic testing, blood workups for various immune issues, etc. until they finally landed on PSVD after an initial biopsy and a vascular study confirmed it. Apparently it's rather rare, and definitely wasn't the first thing they thought of when they saw someone come in who was in such a decompensated state. They sent me to Yale's transplant center to begin the workup for transplant, with an initial MELD of 26 during the worst part of all of this; it did drop to 16 when I had my tests for the first day of intake in December.
Flash forward to the last two weeks of April. I lost over 100 pounds from the incident (I was heavy at 250, now hovering anywhere between 145-150 at 4' 11" taking into account fluid fluctuations, I'm on spironolactone) and my liver function tests/other blood tests are perfectly normal and on target and my MELD is a good old 6. The head of surgery for liver transplants wrote in his report that "liver transplant may be avoidable" if I remain clinically stable, and that once I get a test or two squared away, the committee will meet, say I don't need any transplant for the foreseeable future, and discuss my role in a study of PSVD. What WAS found in a second biopsy, however, was that I still have at least F3 fibrosis--no cirrhosis, thankfully, but this finding was startling to me. The report did say the cholestatis had improved significantly and was very, very mild, and my portal vein pressure was just slightly above normal at 7 (I take ursodiol and nadolol, respectively.) Hearing that it was F3 made me super anxious, and I haven't been able to shake this anxiety even with my hepatologist and transplant coordinator reassuring me that I could even reverse some of the scarring.
So what I'm really getting at here is this: 1) does anyone reading this have PSVD and if so, what's your experience been like and 2) is this anxiety unwarranted given the diagnosis and how well things are going? I find myself crying often and so nervous about the future, or if this is all too good to be true and if I have much of a future to plan for and to look forward to.