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Old Tue Apr 13, 2010, 07:40 AM
squirrellypoo squirrellypoo is offline
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Join Date: Nov 2008
Location: London, UK
Posts: 458
Hi Karen.

Is it possible to start the search for an unrelated donor now, so at least you know if a match exists for you and how good the match is?

I'm afraid my experience won't really help you much since my decline was SO fast (first symptoms of anything in October, and being told I need a BMT in January) that there wasn't a decision at all for me, it was "you need a transplant." A life entirely dependent on several transfusions each week isn't really what I call a life. So for me I was just really lucky that there were 3 9/10 unrelated donors on the registry for me.

You mentioned weight, and although I was extremely healthy and active before I got sick (I used to run 10k three times a week and regularly lifted weights), the doctors actually made me gain some weight just before the transplant because nearly everyone loses so much weight through the transplant process because of nausea and mouth sores and have an extra padding is considered good insurance. I was the only one any of the staff had heard of that didn't lose a single pound. *sigh* So I'm not sure to what degree of extra weight you've got, but I'm thinking it's probably not the weight per say that bothers them - it's more likely they're concerned about the extra strain on your heart, kidneys, liver, lungs, etc that a transplant will bring. I don't know what to tell you in this regard because I know how impossible it was for me to exercise when my counts were low, and I love exercising... But you say your counts are near-normal - have you talked to your doctors about trying to lose some weight and strengthen your heart/lungs/etc with the extra time you're buying yourself pre-transplant? (I hesitate to say it because it sounds like advertising, but about 5 years ago I lost about 50 pounds and gained my love of exercise through sparkpeople.com and it's free and devoid of diet quackery. Please please forgive me if this has caused offense, I really don't mean to!)
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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