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Day 105+!
Hi all! Last Saturday we celebrated Rons mile stone of day 100!
To celebrate I reluctantly agreed (only bc I'm a rule follower) to go 4 wheeler riding!!!!
Ron popped on his mask loaded up the ranger (it's like a 4 wheeler w a top) in the truck and off we went.
It's been a busy week for Ron. 4 wheelers, first 6 hour meeting at work, and drove his Grandma to a funeral in Kinder LA (3 1/2-4hours). All of these things are not 100% approved yet but I am bugging him lovingly to make sure his Drs know what hes been doing. And he's mask on, riding in front, excessive washing ect....
Pls consult w your medical team as Im not 100% on board w this much this quick but thanks be to God, donor, this site, and friend/family support, things are as good as they are
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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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