Hello there,
yes its a nuisance when it does all of that i tighten up around my rib cage and its hurts to breathe when it drops a tad fast, and I get really tired. If it drops to fast, then goes to far down, i cant walk a straight line,(I don't drink!!) and I am kind of not there ,its like coming in and out of a fog...it has only gotten like this once pretty badly ..I have similar symptoms to you to, I also have two units always.
I usually, since the last time in April, where my HB went to 67 oops no it was 63 I made a mistake in that last post., I ended up in intensive care with heart failure and my one kidney failed as well, with very high potassium levels, they eventually got me going again.
However I am now very, very, carefull , and around 41/2 weeks before a transfusion I start bloods, roughly every 3 days just to be sure...The thing i find difficult is not having anyone, other than on here, to bounce ideas off .there is every support group know to man here but not for this.
I was under a physician here who asked me to be his patient, as he had never treated any one with this, I said yes ,but he was practising on me, taking my HB to levels so low, it resulted in that episode in April.
.Have you a specialist taking care of you? I don't for now. I am still low grade and keep a good eye on my counts. I have had 3 bone marrows in total.
I don't have a crystal ball, I wish I did sometimes!
!you have a great week Marylee-jane