Thread: Keep me in mind
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Old 11-12-2014, 09:22 PM   #332
fezo
Senior Member
 
Join Date: Apr 2000
Location: Manahawkin, NJ, 08050
Posts: 808
Default Re: Keep me in mind

Well, this has been a long time coming, but here we go...

When we last left our hero he'd barely escaped the second hospital trip...

Well, the news is I'm back on the right medication to keep the toxoplasmosis at bay. For way more information than you need to know about this try http://www.theatlantic.com/magazine/...urce=FB1013_03

Meanwhile on the blood front news is generally good but one insanely frustrating exception. All your usual measures are goo - red cells, white cells, hemoglobin, platelets. The problem is my t cells and b cells. They are lagging way behind and these are what really runs the immune system. T cells detect things that shouldn't be there and somehow communicate this to the b cells which create the proper antigen. My b cells are low but getting there. My t cells are awful.

The result of all this is that 2-1/2 years down the road I'm still considered disabled (In January of 16 I'll go from disabled to Social Security but that's just a technicality. I'm out of the work force and bound to stay this way). I have a bunch of restrictions of which I follow most. Can't swim or walk in the woods. I'm supposed to have all meat cooked well but that's a terrible thing to do to beef.

All that said, I feel fine other than being bored silly. Never realized how much social activity went on at work. Out of about a dozen patients who were my circle of friends while recovering at Hope Lodge NYC for four months there are only three still standing. I'm close with the one and keep in touch with the other. I suspect I'll live to be an old Steve.

All of this I owe to a guy named Carl in Kiel, WI who got himself in the bone marrow data base and happened to be one of only 3 perfect matches in the world-wide data base. Have met him a couple of times and we stay in touch.

For any of you under 60 (leaves me out but they don't want mine anyway) go to marrow.org and they will send you a test kit - just a q tip to do a cheek swab with and send it back in the provided return box. The odds are 300-1 you'll never get called but if you do you can save a life. That's what Carl, who had been a complete stranger, did for me. I know there are more than 3 people with a 10 for 10 HLA (what they check for match compatibility) out there. They just aren't in the data bank.

And if called, they take stem cells NOT actual marrow!

There's more but that should be plenty for now.
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