Right - so I created this page 18 months ago and have done nothing with it since so I thought it was about time I got my crap together.
So to bring everybody up to speed, I have a bone marrow disease called Myelodysplastic Syndrome which means my bone marrow has started to mutate and to produce blood cells that die at an immature state of development meaning that all the components of my blood are affected, ie anaemia, low immunity and poor blood clotting and in effect, my bone marrow is slowly dying. I also bruise like a particularly delicate peach and get out of breath going up stairs. I was diagnosed in 2008 after my wife Jeannette saw I was smothered in bruises (which I was ignoring), nagged the bejaysus out of me and I eventually decided to actually attend one of the many Doctor's appointments that she set up. Blood tests were taken and things and then things moved pretty quickly, I was diagnosed less than a week later as having MDS/RCMD - meaning all parts of my blood were affected.
I've proven to be one of the lucky ones in that my sister Mel is as good a match as it's possible to get as a donor and even better she has agreed to donate stem cells for my transplant. There is an element of risk in the transplant operation so standard procedure is for people with MDS to continue under their own steam for as long as possible. My blood content had deteriorated to the extent that in May 2012 I had my first blood transfusion to bring my levels back up and I had to admit that I felt great for it. The effects lasted for 3 months and I have now just had my fourth transfusion.
The decision by the team at Kings College Hospital is that as I am now transfusion dependant, my quality of life will start to deteriorate if the transplant is put off for longer. I am currently fairly fit and (for a MDS sufferer) quite young, so the signs are positive going in.
