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I'm keeping my level higher these days. I've made it into the 120s. I can't function at work when my HGB is 80. Also, the units have been getting smaller all summer - or so it seems. So now I am lucky if I get 500 ml where it used to be up to 700 ml in 2 units. So every so often I have to ask for a 3rd unit. My HGB drops about 27 - 35 points in 2 weeks.
I was putting up with having HGB in the 70s, but I would be useless for the 2nd week waiting for the next tfx. The nurse finally said if I feel that bad that is no quality of life.
I should add - if I was new to all this, I would probably just go with the recommended transfusion levels. I've been at this a couple years (way too long) and was just tired of dragging myself around. You do get more used to low counts, and if you're not having problems with such a low count, then great. It is common to get 2 units of blood though.
Deb
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