Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
The happiest of rebirthdays to MiniMoomy!
MiniMoomy, I love that! Thank you! hugs xxx
MiniMoomy has had her I/G’s at the JR and is now at the Churchill haematology unit discussing her ferritin levels and asking if they need treating, bearing in mind she has Gilbert syndrome (no I’m not sure what that is either or how it might impact on her liver stores of ferritin)
So there’s a plan (always a good sign!) bloods to get taken on her next I/g session, then on the following one, a bleeding session with fluids in at the same time due to her normally pretty low blood pressure, and see how it goes. Consultant seems to think it might not have much effect on the periodic joint pains but from what I’ve read it should be higher than he suggested....we’ll see. at least they are going to try to reduce that ferritin level at last (it is high enough for her to try to avoid iron rich foods)
Problem is, I suspect it might have to all get done at 2 different hospitals! (Today she was at both, took a whole day to get sorted, her appointment for haem consultant was 3 pm, got seen just before 5!)
I had venesections for about 18 months to bring my ferritin levels down to normal. I arranged for mine to be done at the local hospital with no problems so hopefully your daughter will manage to get them sorted out at the one place.
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Bump for those looking down the Stem Cell Transplant tunnel...... lots of success stories.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Bump for those going though SCT
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