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Old Mon Oct 26, 2009, 12:34 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Leeslay,

Are you being treated for your PNH? Perhaps this is causing your red cell destruction and need for transfusions? If you have clinical PNH, be sure to consult with a PNH expert. Many hematologists know nothing about the disease. There is a very active PNH forum at http://www.pnhdisease.org/modules.php?name=Forums
There is also a list of PNH experts on this website.

I didn't have any major issues with the ATG, whereas your experience sounds miserable. I can see why your hesitant to do another round, especially if you didn't have a strong response the first time. I hope your biopsy shows that the aplastic side of things is improving.

The thing that scares me most about a BMT is the increased risk for infection even years later. How do people mitigate the risk of infection if they have young children (a.k.a germ factories) running around?

Thanks tytd for posting the information about the aamds.org video conference updates - very interesting!
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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