I usually get transfused every 4 wks. with a pre-transfusion hemoglobin of between 9.7 and 10.9. I have intermedia and have just started regular transfusions 3 years ago, although it should have been much earlier because I have had much pain and health problems. I had my spleen out about 12 years ago at age 42. It was extremely big (20 cm.),and I was very ill. I couldn't walk 4 feet without being very short of breath. The doctor said my spleen was right above my pelvic bone when it was supposed to stop at the bottom of my ribs. I also have difficulty with pain meds. It seems I am sensitive to all drugs except pain medication. After my spleen operation, I was fine until I went home. They gave me darvocet or something like that, and I remember just lying on the couch for a week in terrible pain and just waiting like a junkie for my next pain pill, which didn't help that much. When my husband called the doctor to get stronger medicine, he said no.
I did feel much, much better after I recuperated, with my spleen out. Because I live in the rural midwest of Illinois, where no one had hardly heard of Thalassemia, I didn't start regular transfusions for another 9 years, although my hemoglobin would many times be 6.7. I had to travel to Oakland to see Dr. Vichinsky to get the medical help I needed. My hemotologist was never able to help me, even though I told him I would travel anywhere. I was so exasperated; I finally took my health care in my own hands and found Dr. Vichinsky, called him and went to see him. Luckily, my brother lives near there. Dr. Vichinsky was the one who said I should have my spleen out, none of my doctors were able to ascertain if I should have it removed. I do not take any routine penicillin.
Enough rambling.... For me, having my spleen out was a good thing. I think it gets to a point where it is really working against your body. Thanks for listening, Jean