T + 127 The First Cut is the Deepest

It was an early start for me today to get to the transplant clinic for 08:30, after being stabbed three times to get blood I went in to see my consultant.

It was a pretty straight forward review of how things have been for the last week on the reducing steroid dose and as I have had no recurrence of the GVHD the plan is to continue reducing until in about 8 days time I will be off the steroids completely.

Things will then need to be left to settle so I will not start tapering off my ciclosporin anti-rejection drug until March. This is a bit later than I was hoping for but I understand the reasons with having had some GVHD now. This means I won't be looking at getting re-introduced back into society until late March, early April and even then it will be in stages.

I mentioned my current status and the regime I am following, namely eating a clean diet, no going to any public places, avoiding anyone with infection, only going to a couple of other people's houses and seeing a few people. I was sort of hoping that my consultant might give me a little lee way and say "oh you can relax a bit on the clean diet" for example but she just confirmed that I was doing the right things even it was a bit lonely. Ah well you have to try these things.

My counts are doing quite well, my haemoglobin was 11.7 so holding up well. Neutrophils were 1.7 and the bottom of the normal range is only 2.0 

Another interesting piece of information I found out was my Chimerism level. This is the measure of how much of my immune system is from the donor and how much is my original ( faulty ) one. My test back in November showed I was 100% new donor which is a good sign. Now the test is not totally precise and will be repeated at a later date as you can sometimes get some of your original immune system coming back but it is not common and usually only a very small percentage.

I have to confess I'm a little disappointed about the delay in my ciclosporin tapering as I am starting to get a little frustrated with being in purdah. It's things like going to the cinema, concerts and eating out that I miss. There are some good films coming out over the next few weeks and months and I won't be able to go and see them in the cinema. I also miss visiting friends, though after my steroids are over and things have settled a bit  I am hoping to invite a couple other friends round for a drink one evening. 

As for the cinema I'm making a list of the films I'm missing and will get them on DVD at some point. Not quite the same as seeing them on the big screen ( complete with Pearl and Dean advertising ) but it's something.

As for the title of this post, well I'm not sure it is true as blow me didn't I cut my thumb yesterday at the fleshy tip again like I did my index finger on Sunday . I should never have bought that knife sharpener though supposedly you are more likely to cut yourself with a blunted knife than a sharp one. ( The theory being you need to put more force behind the blunted one and more likely to slip.)


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