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Old Fri Apr 6, 2018, 09:35 PM
Heather8773 Heather8773 is offline
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Join Date: Jan 2013
Location: Houston, TX
Posts: 254
Hello

We were concerned financially about my husband taking a year off. He had a job that would have been very physical, around people and around chemicals and germs.

We made some financial decisions to prepare and decided health first.

Unbelievably grateful and totally unexpected his work offered him at 5 months a position were he could do some light work from home and when oked by his Dr light office work for the next year after.

For him chemo brain and I think just physically and emotionally and mentally drained (he always had a brave exterior though) kept him in resting and starting w small activities/tasks like puzzles or similar for the first 5 months then he felt able to start doing some things from home for work.

A big turn around was when he was at 90-100 days and he could finally come home and have our dogs around and feel like responsibility for them and the house. Small as they may have been each task a new mile stone.

I think the new normal and balance of listening to your body and the discipline of how hard to push and how much to just be ok w healing and discipline of making life work w the new rules for the new normal the first year or two is tough but it gets easier.

God bless
__________________
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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