Just a bit of an update and hopefully some advice
Posted: 07 Dec 2015 16:19
I was diagnosed two year ago with low level mds.
Went onto epo but i'm afraid it didn't work, so last year, 2014, started blood transfusions. I only had six units over the whole year.
Started to get worse from about January and needed transfusions monthly with Hb dropping to around 8 or so before the next transfusion, my symptoms when my bloods are low are, headaches in the mornings, palpatations, breathlessness and a rushing or pumping sound in my ears.
I had a second BMB in the summer and no dramatic change however my whites and platlettes are also dropping. Was getting severe stomach pains, and scans and blood tests showed a enlarged liver and spleen. I had a liver biopsy a few months ago and despite being transfused platlettes before the procedure I bled out and ended up in intensive care for several days.
The results have shown that I now have haemachromeatosis and I am now on iron chelation five nights a week.
My transfusions look like they will increase in frequency to every three weeks from four.
My question is has anyone had similar experiences as I read somewhere that iron chelation can decrease the frequency of transfusions and in general how did things go.
Apologies for any spelling mistakes as my spell checker doesn't seem to be working.
PS I'm working full time but I'm struggling so probably not for much longer.
Went onto epo but i'm afraid it didn't work, so last year, 2014, started blood transfusions. I only had six units over the whole year.
Started to get worse from about January and needed transfusions monthly with Hb dropping to around 8 or so before the next transfusion, my symptoms when my bloods are low are, headaches in the mornings, palpatations, breathlessness and a rushing or pumping sound in my ears.
I had a second BMB in the summer and no dramatic change however my whites and platlettes are also dropping. Was getting severe stomach pains, and scans and blood tests showed a enlarged liver and spleen. I had a liver biopsy a few months ago and despite being transfused platlettes before the procedure I bled out and ended up in intensive care for several days.
The results have shown that I now have haemachromeatosis and I am now on iron chelation five nights a week.
My transfusions look like they will increase in frequency to every three weeks from four.
My question is has anyone had similar experiences as I read somewhere that iron chelation can decrease the frequency of transfusions and in general how did things go.
Apologies for any spelling mistakes as my spell checker doesn't seem to be working.
PS I'm working full time but I'm struggling so probably not for much longer.