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Cathleen
Y'all are in my prayers. The feeling of not knowing if/if not something is wrong is terrible. I hate that y'all have been through so much this year. I think the thoughts your having have been had by manny of us so we understand.
It's so good you have kept up w all the medical reports!
Did you ever say that the Dr.s ruled out Aplastic anemia or PNH (proxsymal nocturnal hemagloburia) ? As for MDS I think other members have more info then I do. ITP I think only affects the platelets.
Was there any more info on the BMB reports? (i saw on another post Ruth had great info!) what were her last blood counts if you don't mind me asking?
Seeing a specialist in Hemotology/oncology (and one who actually treats pt w rare blood disorders ) made such a difference in my husband finally getting a correct dx!
No matter what the DX ends up being there is treatment and things are being researched everyday.
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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