I remember posting when we were in the scariest time “ why don’t people post after their transplants to give hope”
Someone told me basically because people’s lives continue and they put this behind them and someone said most people check in when things are scary.
Which I thought well I won’t do that ..
I was shocked to see that I haven’t logged in 3 years next week.
My husband has more energy then I do now a days and is on less meds now. Only an antibiotic 3 days a week, BP meds And nexium
What’s crazy is I don’t remember what exactly each of those drugs listed in my tag line did anymore. It feels like an aweful dream sonetimes.
I remember thinking on day one, 30 days will feel like a year, 90-100 days felt like 5 years and being afraid of how long it would take if and when we would get to 365 days.
But they came. Faster after every mile stone.
God is good and I hope that anyone facing transplant has some hope from this update
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