June 2009

My cyclosporin levels have been up and down. Now we are back to a dose of 75mg twice a day.As my haemoglobin level was 8.3 on the 2nd I was booked in for a transfusion. However because there were no spaces till the following week by the time I had the 3 units of blood my level had gone down to 6.9 - the lowest so far (but actually still alright).

I received a phonecall cancelling the London appointment which was a disappointment as I had been hoping to gather more information on potential donors. The reason given was that they had no new information to give us so in fact it was thoughtful of them to save us the journey from Dorset. However, I had already booked to go and see a show so we went anyway, staying overnight with our son - ah the joys of a student flat - actually it was very clean and tidy to be fair!

On the 16th I had my desferral pump fitted to allow the excess iron to be excreted. This involved a plastic bottle (like a guinea pig feeding bottle) being attached to my Hickman line. The plastic bottle is protection for the condom balloon- yes that's what it looks like - which is filled with the chemical. This chemical is pumped at a very slow rate (1.5 gm per day) into my vein. The bottle lasts 7 days and is worn 24/7 Great! It fits snuggly into a fabric bag and is clipped to a belt tag on trousers or can be attached to a belt which goes round the waist. It felt very strange at first but you do get used to it. The bottle has about 4 ft of fine tube before it goes into the line. This can be neatly wrapped round the bottle most of the time and extended for pushing under the pillow in bed or hooking up out of the way during a shower etc. The most awkward time is trying on clothes in a shop. At least since I am relatively short the tube is long enough for the bottle to stand on the ground.The chemo staff are very good and can disconnect it for short times if required.

I have continued to be infection free with my only side effect being occasional mouth ulcers and bleeding of the gums.

I have continued to take excercise through cycle runs of up to 6 miles and walks. I am itching to get back to rock climbing but that is off limits.

At the end of the month I had the rescheduled visit to London and received the results of the bonemarrow biopsy which was consistent with continuing aplastic anaemia. There was also evidence of a sub-clinical PNH clone (paroxysmal nocturnal hemoglobinuria).

The good news was that I have a number of potential donors and that more indepth matching is in progress. To be suitable a donor has to match at least 9 out of 10 markers so here's hoping.