Go for Transplant

Just returned from Addenbrooke's Hospital with some good news - we are go for a bone marrow transplant!!!!!

Earlier this month we had confirmation of four possible donor's of which one looked a good with a 9 out of 10 match on the initial tissue screening. The high resolution scan has been completed on the samples from this donor and we have a 10 out of 12 match. This is in fact better than it sounds. Apparently there are two markers that transplant consultants feel have no impact on transplants and it is these two markers where there is a mismatch. From my consultant's perspective we have a 10 out of 10 match and we are not going to do better.

We now have a timetable of events leading up to - wait for it - a target admission date of somewhere during week commencing Sunday 26th February.

February will now be a very busy month:-

10th February a day in the Nuclear Medicine Department having heart and liver tests. Got to be at the hospital for 09:00 and based on the last two runs for 09:00 appointments it looks like a 06:00 departure from Bedford. Yes it is only 30 miles but you should see the traffic!!

If your pregnant give me a wide berth until the 11th.

15th February bone marrow biopsy - all say OUCH!!!

23rd February lung tests and clinic appointment - hopefully will get actual admission date.

Still waiting for Bedfordshire PCT to come to the party?????? and provide the funding for the drug (Exjade) I need to remove the excess iron from my body due to the amount of blood transfusions I have had. This problem seems to have been elevated in Addenbrooke's with an aim to provide the drug to me after the transplant.

I have avoided colds/sickness since October 2010, so have just another month to stay infection clear. If you have any bugs or been in contact with anyone ill please stay well clear of me!

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.