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aplastic anemia


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My daughter (who is now 21) was diagnosed with very severe AA in January 1994, almost 7 years ago. Her hbg on her first hosp admission was 4, platelets 12,000 and counts got worse, in spite of transfusions and other supportive therapies. She is an only child of ethnically-mixed parents (my husband, her father, is Mexican, I am Anglo), which gave her a very difficult-to-match HLA type... so difficult that we've never found a match that was close enough to hers to risk a transplant. She had so many transfusion in the first year of her illness that, when it was time for our new regional blood bank to open its new facility, she was asked to be one of the two people to cut the ribbon at the grand opening. Her distinction was that she, along with the other person, were the two highest users of blood in the region for the year prior to the blook bank opening its new facility. The other person was a mother who hemorrhaged profusely after delivering a baby... from some type complication I no longer recall. For many reasons, marrow transplants get more difficult as people get older. They have been exposed to more diseases, which in turn creates more antibodies, making it increasingly difficult to find an optimal match. The overall health of older patients is, in general, not as good as younger patients. The list goes on and on. Transplants themselves are no picnic either, even when there is a 'perfect' match. The conditioning regimen of cehmo and total body radiation brings the patient to just this side of death, and destroys the patient's ability to fight any infection. And at that point, what would otherwise be a 'nuisance' infection (such as a cold) becomes a very real life-threatening event. Transplant technology is amazing but there are other ways to treat the disease. If your dad's platelet count is adequate enough, his hematologist may suggest a course of ATG (anti-thymocyte globulin), with or without a course of cyclosporine and/or other immunosuppressive drug therapy. My daughter's count slowly but surely increased after the ATG. If it doesn't work the first time, it can be done again. And if it doesn't work the first time, it doesn't mean it won't work the second time. I know living in the hospital, getting transfusion after transfusion is no fun, but given the alternative, it's not bad. Amy (our daughter) has tapered off over the past 7 years from multiple units of packed reds per week to a few a month. Then she went to 2-3 units per month. Then the intervals became longer and longer. She now gets 2-3 units of reds a couple of times a year. It's just part of how she 'maintains' her health. I should ad here that just short of a year after she was diagnosed with AA (which is a blood PROduction issue), she was diagnosed with PNH (paraxsymal nocturnal hemoglobinuria), a blood DEstruction problem, more rare but as life-threatening as very severe AA. There is a very good national organization with a website. The old name is Aplastic Anemia Foundation of America. They underwent a name change to reflect the organization's interest in another marrow failure disorder -- MDS (or myelodiplastic syndrome). They are based in Maryland. I wish I had their full, correct, proper name. Neal Young, MD, in the National Blood Institute of the National Institute of Health (NIH.org) can give you there website address if you cannont find it with the info provided here. Please don't give up, nor should your father. Ask questions, read everything you can from good legitimate sources, and be careful of those opportunists who will read your message and respond with some cock-eyed potion that will only separate you or your father from cash, perhaps offer false hope, then let you down. And if you and/or your dad haven't asked for what his "odds" are, don't. After two years, when Amy's health started to significantly improve, I went back and figured out that with her presenting symptoms and all the many, MANY complications she had, she only had about a 20% cahnce at best of surviving. I thanked her hematologist for not ever sharing that info with us. He said he knew the odds but never knew who would be in the group that survived and those that didn't, that it doesn't serve much purpose to know, and knowing can actually have an adverse effect on the mind-body connection such that the poor odds can become a self-fulfilling prophecy. I could go on and on. If you would like to correspond or even talk on the phone, please answer back. With your father being the age he is, I'm guessing we may be approximately the same ages.


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