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Old Thu Mar 22, 2007, 02:11 PM
Lisa V Lisa V is offline
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Join Date: Aug 2006
Location: Waimanalo, Hawaii
Posts: 401
Linda, why did it take them so long to diagnose you? Has your Hgb been that low all this time, or did it come up again for a while? It's pretty hard to function normally at 6. They never transfused you?

You're right that with your ancestry a donor search will be more difficult, but not impossible. Hopefully you'll never have to go the transplant route, but if you do, I would suggest contacting one of the Hawaii newspapers and telling them your story. We have a heavily Asian and mixed-race population base and Hawaii people will respond to a public donor drive for someone of similar ethnicity, even if they're not from here, because we all know how difficult it is. I've seen it happen before, so just keep that in the back of your mind as an option.

Hopefully you won't need it. With no siblings, ATG will undoubtedly be the first line of treatment. What are your counts now? Generally you have to be at severe levels in at least 2 out of the 3 lines before they'll do it.

My husband's gotten the "you just need more iron" remarks too, and it's frustrating. If they really don't get it, I'll say something like "it's not that kind of anemia, it's more like leukemia." Not 100% accurate, but it sure shuts 'em up!
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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