Quote:
Originally Posted by Markitect
A BMT is an option for me, I think. My doctors have done an initial search for potential matches and came up with a long list of people who have at least 10alleles in common with me. I think my age, 38, and the number of transfusions I have had, about 40, makes a BMT less likely to be successful. My low counts are due to both the disease and my recent treatment with Campath (July, 06). I do not have a sibling match for a BMT, but have stored the cord blood from my niece in the event that that technology ever becomes the norm.
Lucky for me I have not gotten sick despite my low wbc and neutrophil counts. I observe strict handwashing, do not go to the mall, movies, grocery, or any other avoidable public place. I am still on the fence about stopping working. I have decided to not think about it for a spell while my head clears.
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wow, sounds like you have had a real tough time mark!
my son shane was diagnosed in october 2004 and went for transplant in november. we didn't have the time to think about anything else really. he was diagnosed with VSAA. i do know that he was getting transfused with blood and platelets approx 3 times a week and that increased the nearer to transplant we got. i remember reading that it is best to hold back on the transfusions, if possible of course, because you can become sensitised - if that's the right word. we were so desperate because shane went into anaphylactic shock with a platelet transfusion, it was only his third one. then did the same with blood shortly after. but other than that, he seemed to be able to hold his own on very low blood counts.
as for the cord blood - i don't understand what you mean about the technology becoming the norm? i guess it's different where you are (assuming you're in the US). i know of an AA patient here who went to transplant with his baby sisters cord blood.
and, i take my hat off to you for being able to avoid crowds! we found that extremely difficult post transplant. but i guess you have experienced this far longer than we had too. how you manage to work i just don't know - you must be exhausted!
keep your spirits high and take care,
gina xxx