29/05/2013
Hb 10.8
Ntl 1.35
Weight 10st 2lbs. (64.4 kilos)
Well hello bloghos I thought it was time to update.
It is now day 100 since the transplant and so far (barring a couple of minor blips) the status of my graft is looking very good. One thing of which I was unaware is 'chimerism' and for those of you to whom this is also news, I offer the following layman's explanation.
Post transplant, the recipient (ie me) has regular tests conducted on bone marrow samples taken from the coccyx at the back of the pelvis, which basically involves having a dirty great big needle stuck into the core of the bone (under local anaesthetic) and samples taken from the marrow inside. This is done at approximately day 25, 50, 100 then at six months and 12 months. One of the tests is to determine how effective the chemo has been at killing off the patient's existing bone marrow and how fully the donor stem cells have transplanted.
The readings for my first two tests have so far been 100% - meaning that the chemo has fully destroyed my diseased bone marrow and that so far my marrow appears to be composed of the healthy donor stuff. If it stays this way, it would mean that I could be cured of MDS rather than just being in remission, which is way better than I ever expected, but time will tell eh?
I ended up being in Kings' College for just over 7 weeks in total. In the end it was decided that keeping me in because of the temperature spikes was doing nobody any good - least of all me so I was discharged on March 26th. The intervening weeks are all a bit blurred into one now and although being home was a boost it was in general not a jolly time. My weight continued to drop and I bottomed out at about 9st 12lb (62.5 kilos) and found that I had no energy, no appetite, sleeping for 16 or 17 hours a day and so apathetic that I couldn't be arsed to do anything - no contact with friends or family. I even caught myself walking with a stoop, hunched over like an old geezer and had to train myself into standing upright! One other unwelcome side effect is that my finger nails are going to fall out - the new ones are growing under the old dead ones, slowly pushing them up my finger and detaching them from the nail quick - yuk.
Thankfully in the past 2-3 weeks things have started to pick up - I've got my appetite back and I'm up and about, driving again and pushing to do more. My medication has been reduced over the successive weeks such that it's now down to about half a handful a day and I'm certain that this is contributing to the improvement. It is still a new experience e- being on the other side of the transplant and having such a big horizon - previously life had stretched as far as getting the transplant and no further.
