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Old Wed Jan 8, 2014, 01:03 AM
Heather8773 Heather8773 is offline
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Join Date: Jan 2013
Location: Houston, TX
Posts: 254
Kris thank you your response is perfect timing! My husband is approaching 100 days and I'm a total safe then sorry person (only exception was we were around our little dogs around day 60 but w extrem caution [other then sleeping w us;/) but I have been questioning lately if I'm to strict w "the rules" bc I feel like in other peoples eyes i am and my husbands been patient but I think he's so ready for the relax in rules at 100 at this point. Your right though whats 24hrs? When things have been working. My fave advise a PCA gave us was " look. I've played and joked w y'all but now I'm going to be serious. The people that end up admitted back here or even worse don't follow the "rules" (of course she didnt mean things out of our control) they are so ready to get back to the things they did (crazy things like smoking outside at under 40 + ....etc..) but there are things happening in your body that are so complex and profound. They are just going to take a year ( at least) to heal and complete. So I don't care if your feeling good full of energy. Don't over do it, these things take time!"
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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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