Discussion Forums > Working Towards a Cure

The Carao Trial - How effective is it & who benefits most etc.

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maryo0m:
YAAAAY thanks alot MANAL , I'll talk to my friends in Eygpt but , where in Eygpt do they deliver it to please inform me with details ,


thnx,

mariam

Manal:
You are welcome Mariam. I received them directly at my home address

manal

maryo0m:
awsome thats good to know thnx again

Sharmin:
Andy,

Can some of the symptoms that Zaini, Maako and I describe during the last week before tx be related to hypoxia and an increased volume of blood flow during the last week due to the bodies response to low hg (the body produces large volumes of blood in response to the low hg level) causing pulmonary hypertension?  This really makes me want to keep my son's hg above 95 at all times!

Sharmin

Andy Battaglia:
Sharmin,

The reported symptoms are fairly vague so it would be hard to say definitely, but the hypoxia and increased hemolysis can both lead to PHT. This is a main reason that acceptable pre-transfusion hemoglobin levels have been reconsidered in recent years. Preventing the problems associated with low hemoglobin levels is becoming more of a focus in thalassemia, especially as the effects of higher Hb are observed in chelation compliant patients. This will cut down on low oxygen problems and should also decrease hemolysis, by reducing bone marrow activity which of course means fewer bad red cells to be destroyed. Whether any of this or something else is responsible for the described sensations is probably a guess. These are the types of symptoms that would not be noted by most doctors so there may be little if any awareness that patients experience these symptoms.

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