After following a 4 to 5 weeks between transfusions program for 4 years, the doctor at the Chicago center thinks I should change to 6 to 8 weeks between transfusions. This came about because he is concerned about my high ferritin level - between 2800 and 2900. This treatment change goes against what Dr. Vichinsky set up for me in California; he wanted me to keep a mean hemoglobin level of 12. The Chicago doctor thinks since I'm only heterozygous for thal B, that maybe my symptoms are caused by something else.
So now my hemoglobin is going down, and I am getting more and more tired, and I don't know what to do. I called Oakland and have been playing phone tag with Dr. Golden.
It just doesn't seem right to me to change a program that was working. I still have a lot of symptoms that have been called fibromyalgia, but that shouldn't change my transfusions. I am frustrated because it is so hard to deal with doctors who are so far away. I will have to try again tomorrow. I just know that I can't function very well anymore on a low hemoglobin level.
I'll let you know how this gets resolved. Jean