Background

On returning from a business trip to Hong Kong in October 2010 I visited my doctor as I had a stinking cold that would not shift (I don't get colds) and I had chest pains. Having had stents inserted in an artery some seven years previous my doctor called for a complete blood check. Within a week I was in Bedford Hospital being told that I had a form of Myelodysplastic Syndromes (MDS). I was referred to Addenbrooke's Hospital and in February 2011 my disease was narrowed to myelodysplasia and that I would need continuing blood transfusions. This results in a visit to Bedford Hospital ever two to three weeks for two or three units.

The long term prognosis was not good and so I was referred to Bart's in London as a possible candidate for the Revlimid clinical drug trial. Anything was worth trying at this stage for a few extra years. Results of the tests prior to entering the trial in May 2011 changed my diagnosis to Chronic Myelomonocytic Leukemia (CMML).

After much discussion as to whether Azacytine was approved my NICE for my particular variant of CMML; it transpired it was not; I was recommended for a bone marrow transplant in September 2011. In October 2011 I was accepted on the bone marrow transplant programme and a hunt for a donor started.

At the same time the battle started with Bedfordshire PCT to get a drug (Exjade) that is needed to remove the excess iron from by body caused by the multitude of blood transfusions. The first application was refused and an appeal has now been launched.