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Old Sun Mar 31, 2013, 07:16 PM
Heather8773 Heather8773 is offline
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Join Date: Jan 2013
Location: Houston, TX
Posts: 254
Cathleen
I'm sorry y'all have been going through all this and still no answer!
Do you have all of Hanna's medical test results printed and organized in a binder? if not you can have the offices give you copies of all her blood tests and bmb/bma results. Then have an other specialist review her case before haveing to have anymore Bmb?
I will say we have been so impressed by the Houston medical center. We had another Dr before switching down there and it is a night and day difference. People fly from all over the world to go there. Some people see a Dr once or twice a year at MDA and see a local Dr who will keep the
Dr at MDA informed the rest of the year. Which I'm sure w y'all being in Ca would be good. Once you have a DX there are a lot of organizations that will help y'all w travel expenses.
Also Texas Children's in the med center is amazing as well.
I hear the same about NIH. I think they have programs that cover pt costs.
Best of luck y'all are in my prayers!
__________________
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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