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Welcome!
Welcome!
This is a great place to learn from the experience of other patients.
It's good that you are thinking about transfusions now, before you are faced with falling counts that make transfusion truly necessary. My introduction to bone marrow failure came when a routine visit to my family doc pegged my HGB at 6.2. He was amazed that I was still walking around. He immediately sent me for two units of packed red blood cells. Over six years, I have had more than 100 units. And I've never felt they have impacted my quality of life — other than to relieve fatigue and keep me alive.
Coincidentally, my HGB was 7.6 today. I can function at that level. Get me in the 6s and it gets pretty rough. I see transfusion as just a fact of life for folks with bone marrow failure.
Any idea why transfusions were seen as negatively affecting your friend's quality of life?
Best of luck to you!
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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