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Kim my husband has needed blood and or platelets every couple days since being admitted. He just recied blood and platelets 2 days agoand he is on day +16 . I figured it was just due to them wiping out all off his stem cells and maybe agrivating his PNH as those cells were being destroyed. But that was just a thought not something I ever verified.
His team seems to feel like its normal to need blood products that's one reason they do a CBC every morning. But everyone has a different amount they will need. their only concern on the transfusions is the iron (which I'm sure you know)
Can't say I wasn't shocked though from him going from 4 wks between transfusions to a couple days between so I hear ya.
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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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