I figured I would post an update on how I am doing. :)
I have yet to get a true diagnosis for my case. I was given 3 different things it could be or a combination of the 3. *YIKES!*
Auto Immune Hepatitis
Primary Biliary Cirrhosis
Primary Sclerosing Cholangitis
I finally got to see my family doctor about the rest of the stuff the transplant team would not deal with.
The head of my transplant team told me all of these (listed above) but would not give me a def answer yet, since I am roughly in stage 1. Also told me that the pain I was talking about was nothing to do with the liver. Said I could take up to 4 Tylenol per day. Get the Hep B injections just to be on the safe side. Ok. Fine... They pretty much just sent me packing home since I was not in a more of critical stage. Told me that if I felt worse to just head back to the emergency room. How fun huh?
Now I just saw my family doctor on the 26 Of Feb. (My family doctor ok'd to get my shots where I live, instead of driving for 6 (3 there and 3 back) hours just to get them.) He asked me about the meds I got from the transplant team, whether I was ok with them or not. Asked me about the meds he gave me. Ok with that.
He also checked my liver again and I do still have mild inflammation but nothing to really worry about now. I did ask him about my pain. It generally is in my stomach right under the right rib cage, my back where the liver is and the pain in my right shoulder blade. Now everyone who does suffer with PSC find out they have pain in these general areas, so pretty general thought the liver is causing this. My family doctor was furious with the transplant doctor. He pushed on the spots and felt me cringe with the pain. Said to me "Bull if that is not your liver..." and "that I should go and kick my transplant doctor in the leg and say 'that is not leg pain'" Same thing...Long story short, instead of 4-6 ibuprofens and 4 Tylenols a day, I get to take 1 slow release oxy every 12 hours. What a difference! I don't have pain anymore and feel better not taking soo many more tablets that CAN mess with my liver.
So more or less, I am still going day by day. Got my second Hep B injection and in 2 months go for more blood work. See if my numbers continue to go up. (slowly within 4 months they are going up)
Sorry for the long typing/reading, but my update. :)