[Debra]

Hello all. I'm not a new member, but haven't contributed until today! My Dad's story is a long one - and he's been a trooper through it all! In June 07 he had a reoccurance of polyarteritis nardosa (vasculitis). His rheumatologist decided to treat the vasculitis with Cytoxan, which had a better chance of putting it into remission. Unfortunately, Dad was the one in a million for whom the Cytoxan destroyed his bone marrow. Of course, we did not know this was even possible! I took Dad to the local hospital on August 4, 2007 because he was feeling extremely weak. After a CBC, things got a bit crazy! A hem/oc was called in, and dad was given blood transfusions. A BMB was advised, at which point we were informed it looked like he had aplastic anemia - though the local hospital didn't treat it. We transferred Dad to Zale Lipshy, part of the UT Southwestern medical center. Unfortunately, Dad also had acquired a fungal infection in his blood. Dad spent 5 months in the hospital - battling infections, pneumonia, CDIFF, AFIB, fluid overload that damaged his heart and caused him to end up in the ICU on a ventilator - there's more, but I think you have the picture!! We've also had a terrible time with insurance - Medicare has stated that Neupogen and Procrit "are not indicated" for aplastic anemia!
ATG (horse) was administered in Sept. 07. He came home on Jan. 16, 2008 - totally dependent on Mom and myself. We had to move him using a "hoyer" lift, as his muscles were so deconditioned he was unable to even sit up! We purchased a handicapp accessible van to transport him to and from the doctor and the hospital. He has been transfusion dependent - platelets weekly and blood every 14 days. He had the rabbit ATG in May 08, and so far we have not had any results, his transfusions have remained the same.
After many months of physical and occupational therapy, and "Deb therapy" Dad is finally able to take several steps with the use of a walker!!! He continues to gain in strength and endurance, though his doctors did not believe he would ever walk again due to the high doses of medications he received. They believed his muscles had been permanently damaged. We believed in Dad, and never gave up.

We know what caused Dad's aplastic anemia, however, no one seems to know what his chances are for recovery. I would be thankful if his transfusions were further apart - as his quality of life would be so much better. We spend so much time in doctors offices and the hospital! Dad is having side effects from the Exjade - he is nauseous and has diahrrea. The neupogen injections also make him feel like he has the flu.

I have so many questions, I don't know where to begin. It is very helpful to read through this website, you have gotten me through some very long and sleepless nights. Sorry this is sooooo long!

My name is Debra - not Dera - but I don't know how to change it!!! Thanks for letting me participate. Keep the good information coming.....

Debra - daughter of Paul, diagnosed with SAA in Aug. 07