Today I went in and asked about my levels again. They haven't checked the iron levels in about 2 months - very frustrating. So they pulled for that today. The bottle says 125 so thats 1375 a day?! I think thats too much. I asked him and he wants to check my levels before he decreases it. I am very frustrated about everything with my Dr.s office. I have to tell them to what to draw for, what levels they need to be keeping track of - cyclosporine levels, etc. If I were better I would go to Denver and see the Dr up there. But its a 4 hour round trip drive and I'm not up to it right now. This time around I am so swollen and bloated I feel like I'm going to pop!! I am going to start decreasing my prednisone to get off completely within the next two weeks. Which is fine with me. I hate prednisone.
Lee-39 years old-AA,PNH and chromosome 12 disorder-1 rabbit ATG treatment and 1 horse ATG treatment. Getting my bone marrow transplant on November 23, 2010!!!! Counts as of 12-27-10 HGB 12.0, WBC 7.8, platelets 80, Neut# 3.9(12-24-10)!!! Just a touch of GVHD but back home!