A new member greeting

[GretchenMW]

I just wanted to extend a hello, as I just joined tonight. Although I am not on the roller coaster ride that is AA or any other bone marrow failure for that matter...my journey was almost 28 years ago.

I was diagnosed at the age of 14...not all that far into the adventure of high school. My parents took me to my pediatrician after school one Friday night to see what was causing the unusual breathlessness I had been experiencing for a few weeks after getting over a run of the mill respiratory virus. A chest x-ray was done along with the routine finger stick. The x-ray was clear, but my blood counts was not. 1,000 platelets, WBC: 2.95; Hgb 5.5. My mom and I were in such shock as we left, we forgot that my younger sister was in the waiting room...If she hadn't followed us...well, I would like to think we would have remembered but I am not sure.

We had a 1/2 hr drive home in the dark remembering my doctor's suspicion that I either had Aplastic Anemia...which we had not heard of before...or leukemia...which we had heard of and didn't like one bit. After getting home and breaking the unbelievable news to my dad, my doctor called to let us know that the University Hospital in Madison WI wanted us up there that night. We arrived around 9:30pm and a bone marrow aspirate and biopsy was performed about midnight. The diagnosis was of course Aplastic Anemia. My parents told me many years later that my hematologist that night told them to be prepared that I may only live another month.

And here I am...by God's grace...almost 28 years later.

There is hope.

[squirrellypoo]

Hi Gretchen.

Wow, I'm flabbergasted to find someone else with such a long ATG remission! I had mine in 1984 and at the time, the doctors told my parents I was cured and that was that... I lived 25 years of a perfectly normal life, and AA was just "some disease I had as a kid". I didn't even get CBCs, and I was told not to even mention it when I donated blood.

So when I suddenly and very abruptly got sick in late 2008 I was referred to Prof Marsh at Kings (one of the world's leading AA experts and researchers). she told me that as far as she knew, I was the world record holder for ATG remission at 25 years and that it normally only works for 5, 10, or 15 years. So to find you here at almost the same length of time is like finding a needle in a haystack!! But at the same time, I don't want to worry you, but you're living on borrowed time. I would've lived my life differently if I'd known that my AA would come back at some point and I certainly would've been more careful around household chemicals. Prof Marsh said they can never truly pinpoint what has triggered an AA relapse, but that some people are just more suceptible to the known triggers than others. Lucky us...

Anyway, I don't want to be a downer - I just wish someone had told me years ago what I'm telling you now: Be extremely careful, and never take a single day of your life for granted.

[GretchenMW]

Those are good words to live by...for anyone really...only God knows the number of years He has ordained for us here.

I do happen to know another AA patient here where I live (get this...we actually worked together). He was dx in 1981, had ATG, and as far as I know he has not relapsed either.

I would be curious to know how many 20+ yr survivors are out there.