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Old Thu Aug 29, 2013, 08:15 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Quote:
Originally Posted by Honey View Post
The reason I asked about work is because I can't seem to concentrate.
Hi Honey!

I run a small newspaper -- a real mom and pop operation -- so I sell ads, build ads, attend and report on meetings, write stories, edit stories written by others, and lay out the paper.

Back when I was being transfused every other week, I would have a transfusion when I dropped below 8. So I spent most of the time on a two-week slide from 9.5 to 8. I never felt that I had trouble with concentrating or doing the job because of low HGB. I did take afternoon naps pretty often (I'm self-employed and work mostly from home).

However, in the first few months after I was diagnosed, when I was deciding what course of treatment to take, I was highly distracted by the task of learning everything I could about the disease. I checked Marrowforums multiple times during the day, watched the whole backlog of webinars and conferences on the AAMDS website, read journal articles, and so on.

I recall that sometimes it would the crunch day when I am supposed to be laying oHandi quilter quilting frameut the paper and my wife would come into my office and scold me because I was on Marrowforums again. I spent every evening filling my head with everything about MDS.

So, I don't think the low hemoglobin interfered with my focus, but I think mentally processing the fact that I had this disease that was trying to kill me did drive me a bit to distraction.

I learned a lot through all of that, and ultimately, somewhat serendipitously, found a treatment that is working for me. So I wouldn't change anything. But it was distracting. I once told my research nurse at NIH, somewhat to her horror, that my disease had become my hobby.

I do think you have to negotiate your target transfusion number aggressively with your doctor, particularly if you are on a fairly regular schedule. You're going to need the blood no matter what, so why suffer? By the way, that is the attitude at NIH, who typically transfuse men at 9 and women at 10, as I understand it.

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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