It's my 4th birthday today :) Four years ago I got my stem cells and a new immune system from Dorian. Once again, THANK YOU DORIAN!
Last time I posted I was feeling pretty good and my Ferritin was down between 500 and 600. Some time since Dec. my ferritin decided to go up around 1000. I know it can change when the body is under stress. We had stopped chelation. In January I had an upper endoscopy to tie off any varacies in my esophagus from pressure in my damaged liver. There were none that needed banding, good news. I saw Dr. Galvin, my transplant MD in February and was feeling so good I asked if he thought it would be ok to get a minimal part time job. He said yes but not to take on too much too fast. One week later I started having gut issues, bloating, pain, diarrhea.
This got worse and in april I asked Dr. Galvin if this could be graft vs host. He prescribed a med that works in the digestive tract, I guess it was a steroid of sorts. Two weeks later, my weight is down to #140, very concerning. I recontacted him and stopped the new med. He scheduled an upper and lower scope to see if the problem could be identified. The found nothing more that one polp, which they could not remove because, once again, my platelets took a dive and were at 40,000 Dr. Stein, the doctor that did the scope, said his guess is it is related to my liver issues.
So I made an appointment to see my local liver MD. He ran more blood tests and my Ferritin is still around 1000. The question now is to start chelation again or not? He also ordered a test of my poo to see if I am absorbing fats or just passing them through and I will be getting an ultra sound of my liver and spleen tomorrow. My gut issues seemed to have resolved somewhat, just can't get off this roller coaster.