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Old Tue Sep 13, 2016, 02:14 PM
Margaret W Margaret W is offline
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Join Date: Dec 2015
Location: Michigan
Posts: 31
Charles, if you have a good donor, and due to your youth and (I assume) other good health, then maybe so re: a BMT. I did know a man back in the '80s who was my age, had his own home construction company and got diagnosed with VSAA. (One day, someone noticed on the job that his back was one huge bruise! He was short of breath, too.) He had ATG for 14 days in 1986 and recovered completely. Today, he's retired, having left his construction business for his sons to take over, and he's enjoying a healthy retirement. ATG worked perfectly for him. But as I say, everyone's case is different.

Today, the effect on the donor of stem cells for a BMT is like donating blood, I understand. Back in the '80s, they made several punctures and it was like having many bone marrow biopsies in a row. I understand why none of my four siblings wanted to do it (although donors do regenerate what they've lost within days; it should have no long-term effect on them).

You're right: I've never had cyclosporine. The team I saw at the Cleveland Clinic in September, 2014 couldn't believe it, but it's true.

You're probably tired because your hemoglobin is low, and your RBCs are likely low as well. Some people (they say) get tired because their platelets are low. I tend to believe that as I get older and my platelets consistently stay below 25K. I'm tired. Down for the count. (But I also have hep. C from a blood transfusion in October, 1987, and that could be part of it.) Before I was diagnosed, when I was in high school, I participated in very few after-school activities because I would take a 3-hour nap when I got home from school every day. No one was alarmed about it except for my paternal grandfather; he kept saying, "There's something wrong with Margaret!" but no one listened to him. If you feel like taking a nap and really want to just stretch out and doze off for a few minutes or so, please just arrange your schedule rather than try to tough it out. You'll feel healthier and better if you do it! Be careful with the steroids, too; you can wind up with crippling avascular necrosis in your hips, knees, shoulders, etc. by the time you're 40 or so. That happened to me as well.

The process of a BMT is that you get chemotherapy to kill off your own stem cells and then the donor cells are infused in the form of a blood transfusions. Then they wait and see whether the donor cells are showing up and proliferating; they monitor you to make sure graft-versus-host disease isn't setting in and they treat that aggressively and effectively if it is. Those who've had BMTs here could go into more detail. Thirty-three years ago, when I was going to do it at "Fred Hutch," the description rather frightened me, but it's a whole new world of BMTs out there now. Interesting point is that if I'd gotten a transplant from one of my brothers, my chromosomes would have shown up in testing thereafter as "XY" (male) rather than as my own "XX" (female) ones. Wasn't too sure about that, but it was the least of my problems.

It's good that you have complete confidence in your doctor. That is SO important. I just lost my long-time hematologist (he was also a friend) because he got cancer, and I was devastated for awhile before I found Dr. Dale Bixby at the University of Michigan.

They will let you know when they believe that you MUST have treatment. They won't mess around with you, and you'll be fine with it when/if it happens. (Who knows? You might even spontaneously recover!) They told me that in the summer of 1987, and I knew I was approaching the end of the line by the late summer. I could feel it. In 1983, when they told me I "had" to have a BMT, I said, "Nah..." and that's why I was okay when my siblings turned me down.

You will be in my thoughts and prayers as you go through this...
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Margaret, SAA patient diagnosed 1972; ATG 1987; moderate AA for years; hep. C from transfusion 1987; now SAA is back.
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