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Where are y'all located? I'm sure someone here can refer you to a specialist close to you. I cannot express enough my gratitude to the people on this site (and pnhdisease.org) that pushed us to see someone who really had in depth knowledge on these tricky to diagnose/treat diseases. Until we made the switch to meet w a specialist my husband was only being treated for a secondary marrow disease and his first Dr completely missed the primary disease.
And if anything peace of mind is priceless....
If your questioning that something's been missed why not double check?
Hope you recieve the care and answers y'all diserve!
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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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