A very quick post to say that I had my clinic appointment today and everything was fine. Jas was happy with my progress and is dropping the steroids down again a little bit, to 10mg/day - on the way to their eventual target of 5mg. The Neoral immunosuppressant levels are also a little high, so that's likely to drop too, and from previous experience even a small decrease in the Neoral dose makes me feel quite a lot better and more human, so that's good news.
I also took part in a clinical study today where they are using their brand spanking new posh and incredibly expensive looking CT scanner to take pictures of various patients at different stages of lung chronic rejection to see if CT scans could be used in future to diagnose early signs of rejection, cutting down on the number of bronchs that need to be done. I was injected with a marker that makes the blood vessels supplying the lungs show up very well under the CT scanner's X-rays and then rode the machine (it's one of those ones where you lie on a bed and it swooshes you back and forth through a do-nut ring shaped scanner). The marker injection makes you feel extremely weird - a hot flush all over and the sensation you have let go of all the bodily functions ...er... down below...
This week I also endured the oesophegal manometry and ph study which was very unpleasant. Having a well-lubed (KY jelly tastes bad!) flexible sensor about half the diameter of a pencil shoved up your nose and then 60cm down into your stomach is not great. Having it then taped to the side of your face and left there for 24h is close to maddening. Gives you a very sore throat. The results of all that will come in the next few weeks and that will tell them whether I need the other operation to sort out the reflux. Sounds fairly likely to me at this stage as there are real benefits to the long term health of the lungs.
Back to clinic in 3 weeks. I'm now on an 'every 3-weeks' regime until the 6-month point, which is the next major milestone.
5 months ago