@feruj I can relate to your fears and desire for privacy, especially when liver disease happens or seems to happen suddenly. I’m about 16 months post liver transplant. I was diagnosed after having an episode of confusion/hepatic encephalopathy while driving. In retrospect I had symptoms I explained away for about a year but it was sudden to me. That was March, 2021 and I finally had my day long evaluation with the liver transplant team at MassGeneral in Boston. I was extremely afraid—I was very sick at that point and feared the unknown. However, my partner drove me to Boston from western mass, we stayed overnight in a hotel the night before and here is what happened the day of my evaluation:
1. We met with the nurse coordinator along with other patients for basic education, q&a. 2. Vitals taken and labs done. 3. I met with a hepatologist and a nurse. 4. Met with a social worker. 5. Met with a surgeon and medical director. 6. Met with nurse coordinator. All of this was in one office and providers came to me, I stayed in the same place. The next day I had phone/zoom meetings with a nutritionist, psychiatrist, and financial/insurance guru. All of this sounds intense, but it wasn’t; it was a relief and from there I had a plan. I was listed in September and had my transplant in October. Being hospitalized afterwards was healing and stressful but I got to come home and had Thanksgiving with my family, still in early recovery but feeling well and unbelievably happy. This is a very hard journey. But so worth it to reclaim your life and health. I waited about 10 months before returning to work- a new job as I had to leave my original one- and I’m working part time for a while. I plan to work full time in the fall. Before all this, I took no medicine, had only been hospitalized for appendicitis, and the birth of my daughter. This site has helped me a lot post transplant- feeling in company of others- and I wish I discovered it pre transplant. All care to you.