Thank you as always for your wonderful comments and emails which always a) help me with my perspective and b) are just so lovely to read.
I went to Harefield on Thursday to see what was going on. All in all the appointment went well. Oxygen saturations were 100% (as the nurse said, can't get much better than that!) Lung function fantastic (tiny drop but not big enough to be of any relevance) Blood pressure etc all normal, X-ray was described as "pristine" (woohoo!)
Of course I can't leave a hospital without something being a slight cause for concern and it appears the latest organs to need an ASBO are my kidneys. They have been messing around intermittently and so the docs looked at the general trend over the year, which is essentially showing a slow decrease in function.
This sounded rather alarming to me but my consultant was fab, explaining carefully that it isn't any reason to panic at the moment, but does require further investigation to try and ascertain just what is causing their decline. The number one suspect is Cyclosporin, one of my immunosuppressants. In fact they are 99.9% sure this is the culprit, but as Dr C said, the one time you assume that's the reason is the time that actually it's a more concealed cause.
So I have all sorts of fun tests booked for August (a day out for me and my kidneys if you will) to triple check everything else and check that the big bad bully is indeed my Cyclosporin.
Progression if it is the Cylco? We can switch me to a different immuno which I don’t really like the sound of as it’s much newer (thus less known about it) and my lungs have been so very good (not a mention of the R word in sight) and as they say if it ain’t broke don’t fix it...but then I might not have a choice.
Anyway as my sisters pointed out, nice of me to pick a different organ to muck around with for a little while. They always have had an amusing way of looking at things...
Sending some smiles!
2 months ago