@italygirl330 I am impressed that your doctors diagnosed cirrhosis with so few symptoms. I had those two, plus some HE episodes, was always cold, and my hands were shaky yet it took a year and a half to get a diagnosis! Did your symptoms lead to the biopsy? My definite diagnosis was made after a CT scan which was done when they discovered high ammonia levels in my blood. My fatty liver was never diagnosed before that.
I presume the referral you are referring to is to a hepatologist. That was my next step after diagnosis. She figured that I had cirrhosis for about 10 years. Some hospitals operate differently and you are immediately referred to the transplant area.
After seeing the hepatologist I was rated and put on the list to be a transplant candidate. Frankly I was not sure that I wanted a transplant, it sounded scary, but eventually I felt less well so when the opportunity came and they had a liver for me I was happy about it. I had the surgery, had a rapid recovery, and felt great in a relatively short amount of time. Sure, there are some inconveniences from the immunosuppressants but they are all manageable and not too bad at all.
I hope when you do see the next doctor that you will end up as a candidate and eventually have a transplant, assuming it is cirrhosis and there are no other options. I live in NH about 55 miles from Boston so I used Mass General as my transplant center. They were great but I understand that Boston is an area of high demand so the MELD score (you will be given a MELD when you see the transplant doctor or the hepatologist) generally has to be in the 30s before transplant occurs but I was fortunate, mine was 28. There is a service, “Compare Transplant Centers” that will help people find a center where they might be able to get a transplant with a lower MELD than in their home area. I did not use them but did my own research and was about to reach out to Mayo to get listed but happily I didn’t end up needing to. I had already spoken to them and it sounded promising. Compare Transplant Centers posts a lot on Facebook so if you are on there you might want to sign on to get their posts.
SRTR is also a site that has statistics on every transplant center so it is worth looking at.
I hope things work out well for you. Please keep us posted, and if you have any questions feel free to ask.
By the way I like your name. We have been to Italy two times and hope to go one more time. My husband’s father came from there.
JK