First I want to let everyone on here know I'm sorry that you're here. This disease sucks.
I was diagnosed and treated in July 1992.
I honestly cannot remember all of the medicines I took, it was just too long ago. I do know for sure that I had ATG, not sure which one though. I remember the doctor telling me there were two different kinds but I don't remember which one I got. I also know that I took Cyclosporine, Prednisone, an antibiotic, iron, an inhaler and there were more, just don't remember.
A few years ago I was declined for life insurance. The company I applied with has a "permanent decline" for SAA. They didn't specify why tho, just told me I would never get insurance through them. So, I scheduled an appointment with the doctor who treated me (he was still there after all these years). Since the disease was so rare in 1992 and I was his first patient ever with it (3rd in the history of the hospital) I asked him to review my records and if he knew then what he knows now, would he still diagnose me as SAA. I had a lot of markers for SAA, but not all, and I also had characteristics of Lupus and Leukemia that aren't usually found with SAA. But not enough markers of either of those to diagnose as that. I made that poor man earn his salary and education.
I was thinking that since I was such an odd case, maybe I didn't really have it and I had something else?
Anyway, the answer was yes, he would still say that was SAA. I then asked him why he thinks that the insurance companies doctors would put a permanent decline on SAA. His thoughts were because ATG can cause Leukemia later in life. Makes sense to me.
Does anyone know a true statistic of my odds and how long it takes? I'm 20 years post ATG so I think I'm in the clear but I just want to make sure.
I still get an annual CBC done and I've had good counts. I've had three children and my counts would always rise during pregnancy and dip after, but they have always leveled again within a few months.
Thanks in advance for any insight.