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Hi Lisa,
Thanks for the encouragement. I certainly don't fit the ATG profile of improvement within weeks of treatment. My response has been much slower, but this week marks 14 weeks since a transfusion.
As for the 2.9 Hgb, it was actually 3.7 the day before. I had called my Doc Monday morning, complaining of fatigue and generally feeling lousy, not sure if it was the Lyme disease or not. They drew blood, he called the next day, and said I must go immediately to the ER for a transfusion. My son drove me there, I told him to drop me off and go park the car. True story - I did walk in! (and immediately sat down at the reception desk).
The cardiologist who was called in later told me that my heart was very strong; and due to a long-standing habit of cardio exercise, I was able to function with such low counts.
I have learned my limits, I can function pretty well down to about 7.0. My hematologist and I have a deal - as long my Hgb is over 8, I go in for a CBC every two weeks, under 8 - I go once a week. Works for me! Tomorrow is my next CBC, keep a good thought for me, thanks!
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Gloria, early 50s, dx SAA Summer 2007, Pred July 07, Rituxan Aug 07, dx PNH Feb 2008, ATG Apr 08, began Soliris 5/31/11
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