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Scott,
I started at Emory in early March but switched to BMTGA. I was given two doses of ATG/Horse, nearly had a heart attack, coughed up blood and was in ICU for 3 or 4 days - I don't really remember those days at all. When I entered the hospital my platelets were at 4K, HCT was low - don't remember but white cells were normal. I was in the hospital for two weeks and received ATG/rabbit after ICU. I had to have one red blood transfusion and they gave me platelets at the same time for a boost. Haven't had any transfusions since first week of May. My counts are good. My platelets last week were at 252K (they rebounded quickly and have been doing well since) and my HCT was 35.5. At one time my HCT was 37 but then dropped to 34 and is slowing coming up. My ANC has been normal pretty much the entire time since leaving the hospital. I don't really understand the whole 13q deletion thing I have but apparently in April it was 8 out of 20 affected, 0 out of 20 at biopsy in July and now in October 3 out of 20. So I did not get to come off cyclo and get to have another biopsy in January. May have to repeat ATG if results aren't what we want in January. Where is the support meeting? I live just north of Marietta. Isn't is funny that such a rare disease and we were diagnosed at the same hospital probably within days of one another.
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