I am so sorry to hear of this unfair complication! It is good that they caught it early. Do your doctors think the duration of the syndrome will be shorter because of your limited immune system?
Sending healing thoughts and payers your way...
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.