Discussion Forums > Thalassemia Major

transfusion question

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Lyanne:


  Hi Maha.No problem. Actually no one can't really explain :huh even our then pediatrician, since me and my sis was diagnosed/worked up as a beta thal patient. Anyway, It really started when we had our splenectomy, our bt become less frequent, from every month to every two months to every 3 months until we notice our hemoglobin become stable and don't need transfusion anymore. Oh except when I fall ill then I will really need a transfusion. My hemoglobin right now is in 9 - 9.5,   :hugfriend

Dori:
Hi,

I must give the blood for the matching 72 hours before the day I will have the blood transfusion (there must be a better sentence for this, I need some help). It usually takes so long before they send the blood from Amsterdam to Leiden to do there the genetesting and then they must transport it back to the hospital. I have heard this information last week. I thought everything was done in Amsterdam, but I was wrong.

Genetesting is the key to keep the health up to date, but I can't really play with the dates anymore. The blood does not survive the weekend so I must play everything safe.

In the past (0-?yr) we waited also untill I developed fever e.g. . Nowadays I would not let it come so far. I must say that I missed lots of primary school because of this. The first year I had to redo, because I was every week for a few days in the hospital (not in the same place/state as school).

Yes. I do know people who are transfusion free since they had their spleen out. It did not work for me

Dore
not thal, but pyruvate kinase deficiency

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