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Hi Catherine!
I discovered that I had MDS when I showed up for an appointment with my family doc with an Hgb of 6.2. They thought they'd made a mistake at the lab and took another sample to confirm. I honestly felt fine, though I had begun to wonder why I had blood pounding in my ears at night.
I had gone the emergency room with chest pains a nine months before, had an Hgb of 9.2, and did not follow up on the ER doc's recommendations to see my family doc promptly.
So, I think my Hgb fell over a long period of time and I just got used to it. My local hematologist and I agreed we'd use 8.0 as the transfusion trigger. Below that, he said, we're making the heart pump too hard.
So I've been trying to follow his advice. The good thing about my high tolerance for low Hgb is, if this Campath experiment can get me holding my own, without transfusions, someplace in the 9s, I will be just fine with that.
Take care!
Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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