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Old Wed Oct 26, 2011, 10:56 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Hi All!

I've been following this one with interest and have twice written a post and then scrapped it, because I'm not sure exactly how I feel about this. But I have two thoughts that may be useful (or not).

First, I have one doctor that's very computer literate and curious about his patients: Dr. Dumitriu, a fellow at NIH. I know he reads my blog, because he told me he does. In fact, he mentioned checking it before a follow-up call to tell me about my tiny telomeres. I like that. It means he's taking an interest in my case, and going to the trouble of checking up on how I'm doing. On the other hand, it's a public blog, with my name and photo on it, and he told me he was checking it out.

Second, I have another doc, Dr. Wall, my local hematologist, who hasn't yet incorporated computers into his patient communications. We communicate via fax, phone, and in person visits. If I send him a fax, his nurse puts it in my file and puts my file in his inbox. I wonder if the marrowforums posts wound up in teller's file the same way. That is, maybe not all members of the team are up to snuff on computer stuff, but one was, found the posts, and put it in the file for everyone to check out.

I'm not sure that helps (it may be even scarier). (You can see why I have written and then deleted this a lot -- I clearly have no idea what I think, or what I'm talking about.)

Anyhow, I'd suggest, the next time you're in to see your doc, that you casually bring up marrowforums again, and ask if they have ever checked it out. Maybe they will 'fess up. That way you don't have to 'fess up about sneaking a peek at your file (though, as others have pointed out, it's your file, and you have every right to look at it.)

I am sure this post is of absolutely no use, but I am not going to delete it a third time.

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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