Lee
You sound exactly like me! I am going in for my t/p the end of sept 2010--I was initially psyched about it--as you said, "finally a cure!" But then I talked to other ATGers and since they have had success, they want you to have success and can inadvertently scare us out of our t/ps. I was initally dx w/MDS then they said AA w/PNH and had the horse ATG--no change. I now have all three--without any chromosonal changes, so far. I continue to be dependent bi-weekly for platelets (if I'm lucky and they "take"--as I have become allo-immunized) and weekly for rbcs--hemoglobin drops regularly. My doc said, "It doesn't matter what you want to call it, your bone marrow is not working and you need a transplant". I truly believe that I am never going to be any younger or healthier than I am right now and I didn't want chemo that might or might not work on an undiagnosable disease. Serious dose of big girl panties if ever there was a need... It is difficult to be strong when you see your kids, though. You can do it because you have to! No other reason needed.
I had a really bad week 2 weeks ago-crying, angry--wanting to "get things ready", but overwhelmed. Breathe deep and exhale. It passed by talking to other t/p patients who have done well. I have sort of adopted the theory that t/p patients who do well, don't go on these web sites regularly because the are cured or are doing really well and have moved on with their lives. That's my theory and I'm sticking to it!
Contact me through the website and we can talk more if you like.
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Marian , Dx 12/25/09 w/ hypoplastic myelodysplasia and 10% PNH clone. Dx changed to SAA in 1/10, treated w/ unsuccessful horse ATG and cyclosporine. Dx of unclassified MDS or acquired bone marrow failure, PNH clone 39% (after ATG). Due for BMT in Sept or Oct 2010.
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