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Old Wed Oct 11, 2006, 01:50 PM
Markitect Markitect is offline
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Join Date: Sep 2006
Location: Bloomington, Indiana
Posts: 5
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Hi Gina,

Thanks for your response. How old is Shane? I think age has a lot to do with whether or not a person should try a bone marrow transplant or not. I have read about many children who have undergone successful BMTs, but not nearly as many adults. I am thrilled to hear that Shane is doing well after his BMT! Some people react to blood and platelet transfusions like Shane did. It has to do with your body recognizing the blood products as foreign and not accepting them. There is a term for this, but I can't remember it for the life of me.

I constantly get asked why I have not had a transplant, by lay people. I know it sounds simple enough and like a logical thing to do in my situation. Obviously I have spoken to all of the doctors that have seen me over the years about a transplant and have a tansplant specialist. However, no matter how low my counts go, all of the doctors that are currently working with me concur that a transplant is not my best option at this time. I think the "at this time" part is very important to understanding why they are telling me not to get a transplant.

What I meant by "technology becoming the norm" is that there are still a lot of unknowns when it comes to cord blood transplants for adults. It is a very new procedure and there are very few doctors who have performed it on adults with SAA. The NIH gave me specific reasons for not having a cord blood transplant and this is one of them. I don't have them with me, but they gave me more reasons that if I get a transplant it would be with adult stem cells. I have not decided what I will do about this at this time. If some time in the future there is a lot of evidence that cord blood transplant cure SAA, then I will have one. Another big concern is that one unit of cord blood won't be enough to me. If that were to happen, it would complicate my being able to receive a BMT even further.

I guess I am able to carry on because I have acclamated to AA over the years? I don't really know accept to say that it has been such a long and slow process that my body just thinks this is normal. The only time I have trouble now is about 12-14 days after a RBC transfusion when my hemoglobin starts to slip. Today is day 13 and I can definitely feel it slipping. I will get a CBC tomorrow and if my Hgb is below 10, I will get transfused. I am really looking forward to the day when I say, "It's been 14 days and I don't feel anything!"

You take care and tell Shane he is an inspiration to me. By the way, I live in the U.S., currently in Bloomington, Indiana. I am from San Diego, CA. I am married and have 2 daughters, age 13 and 8. My life is a blast, most of the time. Take care.

Mark
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Mark, patient with SAA, diagnosed 2004, treated with r-ATG/cyclosporine in January, 2006 - no response, treated with Campath in July, 2006 - waiting for response.
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