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Lynn,
My heart goes out to you.
I agree that you should contact Neil Young at NIH *immediately* for a 2nd opinion.
You can email his nurse Olga at nunezo[at sign]nhlbi.nih.gov
Don't procrastinate. Do it now! Second opinion appointments are free there. Treatment is too - if you are part of their clinical trials.
There is no harm in sending that email now.
__________________
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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