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Old Sat Mar 25, 2017, 01:13 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Kirag1964,

It is great that you got in with the AA specialist.

I wouldn't worry about going to the fundraiser tonight. Just be cautious hanging around people if they are obviously ill/contagious. Also (and this may be harder), do not drink alcohol, as it suppresses the marrow!

Sometimes you can have a virus with no outward symptoms that will effect your counts. When your counts are low to begin with, any downward motion can make you sit-up-and-take-notice! Alternatively, if you have AA, your immune attack could be progressing. The good thing about this is that you are likely to get treatment sooner, which can ultimately mean a better outcome.

I never had any outward signs that I was sick until my skin started yellowing because of the transfusions. Most people will never know what you are going through unless you tell them. This can be isolating, or comforting, depending on the situation

With time, you will learn how to tell where your counts are at even without blood tests. For example, I remember that if I felt dizzy after looking at the ceiling and then down again, my HGB was in the 10's.

You will still feel exhausted even after transfusions because your marrow is fighting the big fight right now. The boost in energy level is all relative.

It will be interesting to see what all your previous blood tests reveal.

Hope this helps! Get out there and enjoy life! An ANC of 1.4 isn't that bad...relatively speaking
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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