Toast Forum?
Hi fellow AAers,
I know a lot of you are members of the Aplastic Anemia Toast Forum. I have been trying to log onto the Toast Forum for a few days now and have not been able to. Is anyone else having this problem?
Quick update. I am now getting transfused when my Hgb falls below 10. I cannot describe how much better I feel and how much more energy I have since beginning this new transfusion regimen. In case you don't know, I was becoming symptomatic when my Hgb fell below 10 and was making myself wait until my Hgb was in the low 8s to get transfused. This did nothing for my quality of life and when I finally complained to my doctor about it, he wrote an order to transfuse me at 10. So, if any of you are trying to be the "good" patient I was trying to be, stop. If there's one thing I have learned from AA, it's that quality is far more important than quantity.
Since beginning this new transfusion regimen, my transfusions are lasting longer by several days. They were lasting 10-12 days and are now lasting a solid 14 days. My platelets seem to be creeping up since receiving Campath in July. They were 7,000 on 9-11-06 and I was transfused. They are now 13,000 and I haven't been transfused since the 11th. My whites are low, but holding around 1.0.
Best wishes to all of you. Take care,
Mark
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Mark, patient with SAA, diagnosed 2004, treated with r-ATG/cyclosporine in January, 2006 - no response, treated with Campath in July, 2006 - waiting for response.
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