Thread: PNH free!!!
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  #18  
Old Fri Dec 6, 2013, 11:50 PM
Heather8773 Heather8773 is offline
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Join Date: Jan 2013
Location: Houston, TX
Posts: 254
Deb yes it's slow for us too but from what Ive gathered, slow seems to produce great results GVHD wise (IDK if that's AA specific or includes MDS to be honest but I hope both!!!)
My husband is already pretty slim so loosing 20lbs was a lot during transplant. I bought vanilla ice cream, muscle milk powder (and another powder from trader Joes) and milk (sometimes I do chocolate, or eggnog or chocolate egg nog) we make this shake daily and it has helped put the weight back! plus some vitamins back.
Great news about the HGB!!! My husband is at 12.8 hgb, plts 170 and WBCs 2.5 (needing neupagen now and then) his hgb is the highest it's been since his first visit to get DXed. It worries me he's overdoing things w this new energy but I'm happy he has it.
GVHD is worrisome. God has blessed you with positivity and your husband is blessed to have you as his cheerleader! cling to that positivity. That's all the advise I have on that bc I cling to it as well. Glass half full....
Y'all will cont to be in my prayers our friends!
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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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