Thursday, 11 February 2010

Clinic update

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 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.


  1. Great to hear you are doing so well, even if the tests to establish that haven't been pleasant! You should be aware that latest research (from an excellent Research department on Castle Hill) says that Hotel Chocolat pralines are terribly bad for new lungs and that they should be avoided at all costs, or at the very least only eaten in small quantities. Should you find any at home the advice is that you should get someone else to eat them for you as soon as possible...

  2. Whats up Will! I finally had a chance to check in on you. I again had a little bit of a rough bump, but it got better! Keep that in mind. I'm glad things are going well for you and send positive vibes over the pond to you so they continue.

    I have done some research on the new CT scan, a few months ago when I was really worried about my new lungs. That is great you agreed to the study. Signs point that this technology can really help show early signs of any problems. However, the radiation is what scares the docs. It would be great if every time we went to clinic we got one of these high tech CT scans, but thats not feasible right now. It should be a great tool to diagnose early chronic rejection though, if the docs use it at the right time. Because the earlier you treat it the better. There is also a study of a type of MRI(I believe), that you do while doing a sort of pulmonary function test. This seems like an incredible breakthrough to diagnose potential problems, but I am sure the machine costs a small fortune.

    Keep on keeping on!!


  3. Hello lovely Wil and lovely Vicky, sorry not to have visited here for ages - I have been busy having a baby! Elodie was born on 12th Jan and we are both getting to grips with things rather slowly :) Really delighted to hear that you have passed your 3m milestone with flying colours. It would be great to see you at some point either if you make it to London again, or if we feel up to braving the trip to Cambridge with Mrs Boss in tow. Stay well, lots of love, Joanna (and Grant and Elodie!) xxx