September 2009

Wow! I have just found out that I have 5 potential donors! which is pretty good. It sometimes pays to be common.

I am finding that time is passing very slowly - I thought that once a fully matched donor had been identified that things would whizz along. However arrangements are in place for me to visit the consultant at Hospital S and more blood has been requested so things are beginning to happen.

My ferritin level is back above 2000 again - probably as a result of being topped up with blood but having the pump removed over the holiday/ wedding period.

I flew up to Scotland to attend a small college reunion, meet up with friends and to spend a few days with my sister - doing a spot of posh camping - in a (heated) wooden wigwam. I flew from Bournemouth airport where an official gave a very cursory glance at the pump from a distance. No one asked about it (though I was armed with a covering letter from my consultant). I was however, asked to remove my shoes for inspection. I am always amazed to find people who still are not aware of the restrictions though these have been in place for a few years now. The man in front of me was trying to persuade the female officials to take some very expensive body cream as a gift rather than have it consigned to the "bin". What does happen to the stuff in the bin anyway? Do they divvy it up at the end of a shift? How many scissors and penknives does one person need?

On the return journey from Edinburgh airport there seemed to be a different set of procedures in place. My pump was immediately noticed and I was taken to one side by a female official while my covering letter was read. Swabs were then taken and after a quick analysis both I and the pump were deemed safe to proceed. But hey! I didn't have to take the shoes off!

I have been feeling a bit nauseous again with no real appetite - only eating when I know I should. I often start a meal but am full within a few mouthfuls and end up throwing the rest away. It seems to be a bit better if I eat a little and often. The docs did try halving the dose but that made no difference. Also there had been a week on the full dose when I had no symtoms of that kind so it remains a mystery.

I had my usual 3 units of blood at the transfusion centre and went off home. The weather was so beautiful and I felt so energised that I got the bike out and went for a 4 mile cycle, squandering my new blood. (I'm not sure if that is how it works but certainly I feel an instant renewal of energy after a transfusion) En route I met a friend who said she was going to do a 20 mile ride on Saturday and did I want to come along. Why not? I thought. The weather on the Saturday was still holding and a group of 4 of us set off. There was a smattering of hills on the route but I managed very well, getting off to push on the very steep ones. I felt very good afterwards and had no aches in the days following.

Now that potential donors have been identified and one of them has been taken right through the matching procedure and found to be a full match, the certainty of a BMT taking place seems to be getting stronger and stronger. Typically, now I am beginning to feel contrary. With the transplant almost in the bag I begin to wonder whether it is completely necessary - my platelets have stabilised to the extent that I have had no platelet transfusions since mid August. That is not to say they are high. My levels are still hovering around 15 - 20 but they are holding their own.Does this mean that my other levels might start to creep up? I have been very healthy since recovering from the ATG experience with no problems at all My quality of life would suit most people of my age; I am in the minority, wanting to clamber up cliffs and down pot holes so should I be content with the status quo?
After a short phase of doubt I am once again in favour of the BMT. It is recommended by both consultants and is the only true chance of a cure. Remaining as I am, I may at some point in the future begin to be resistant to blood tranfusions which would make it much more difficult to manage. The PNH clone, at present sub-clinical, may become more significant and my condition flip over into myelodisplasia or leukaemia. As a repeat of the ATG treatment offers only a 35% chance of success (and is not a cure) then this is not a feasible solution. So onward with the BMT

25th Sept: I have been suffering a bit from a dull ache in my left kidney area - enough to want to put a warm hotwaterbottle on it but not enough to warrant taking painkillers. By coincidence my kidney scan, one of a set of tests to be taken before going for the bonemarrow transplant was carried out around this time but nothing showed up on the scan.

The other tests which are required, partly to give a base line assessment before beginning the treatment and also to pick up any problems are a lung function test and heart scan (echocardiogram). Appointments have been made for these and I have been weighed so that the amount of chemo required can be calculated.