Hi Andy,
Yes I try to keep my Hb above 9.5 every time. Its the borderline around when the pain begins. Earlier I was transfusing at 20-21 days but recently around 16-17 days to counter with any potential pain.
As for Emby,
Dear, don't worry. That pain I can confirm is associated with low Hb. Last month, I was wreathing in severe pain too (couldn't breathe like you said, severe back pain, back of the head region paining and it was appearing as if the bones went out brittle) and next day were my exams! I had to take 2 painkillers to be able to attend the exams and reduce the pain. When I was transfused that evening, I woke up next day with no pain since my Hb rose up and I felt better.
So the only solution and advice as Andy has stated, is to try to maintain Hb levels around 9.5 - 10.
Best,
-P