Hello , it's my first post here, I am 25years old ,
and I get my transfusions every 2 weeks 450ml
The Doctors years now they are telling me to remove my spleen because its enlarged 16cm
And my white blood cells are between 3000-3500 n sometimes 4000
The problem is thatch WBC started droppping like that when I was taking ferriprox they have dropped even more lower but the doctors didn't stop the medicine just made the dosage smaller but even then I had a problem plus my ferritin went up to 8000, now I am taking deferral again , and my ferritin went from 8000 to 5000 within 8 momths , since I was 12 years old I was taking ferriprox and sice I have stopped it around 2 years my WBC are very often low , the doctors said it is because of the spleen , my hb when I go for tramfusions I try to keep it around 9.5 to 10 and when I leave the hospital is around 12.5 - 13
I always since I was a child had my tramfusions every 2 weeks , my spleen is 16cm for the last 3 years before that was about 14-15. I don't want to do a splemectomy , what else can I do to shrink it? I started taking magnesium vitamin d , c, e , and folic acid , also some pills called moducare that I think they are really helping the immune system. Do you think it would be better to transfuse every week instead? And how much blood should I take? Thanks for your help