Annual Review

I had the final part of my annual review today, I started it back in April but was too unwell to do a number of the tests and so it got postponed until today when they could book me a space.

I'd already had a bone scan which showed low bone density, the chap at the time said it may be of a concern when I reach the menopause...I told him if I reach the menopause I'm going to have ALOT more to worry about than brittle bones haha!!

I had to get there early and did my physio shuttle test where I managed to walk 140 meters not too bad and I only de-saturated to 90%. I then had x-ray and bloods neither of which yielded anything worrying, and in-fact later in the day I looked at one of my x-rays from 2006 and minus the port-a-cath it was pretty similar which was nice to see.

My lung function, which lets face it is what I actually care about the most is low but stable. Dr Bilton and I had a long chat about it and we suspect I have some sort of mould or fungus creeping about the bases of my lungs. She's going to look at my bloods and then make a decision about whether or not to try some anti mould/fungus drugs, though she did say that regardless of my bloods she may give them a try anyway in the hope of pulling my lung function back to about 40% and hopefully getting me off steroids.

The are also going to refer me to the E.N.T guys as I'm marginally worried about my hearing. It is well documented that sustained high doses of aminoglycoside's have a nasty habit of wrecking your hearing, hopefully in the long term things won't get too bad, but I'm relatively certain that the finer edges of my hearing are slowly being lost :o(

It is something I've seen before in another CF patient called Alex Stobbs who is an utter musical genuis, for him to loose his hearing almost seems almost the worst and most painful thing CF could possibly inflict on him, so by comparison me having to turn the TV up a bit louder seem rather trivial.

We talked briefly about transplant but both agreed I'm not quite at that level yet, however we also agree it is something we need to keep a close eye and open dialouge on. I don't want one too soon as the risks involved in the surgery and recovery aren't worth it, equally however I don't want it left so late that I become to ill to survive it at all. To me overall it is, and always has been, a forgone conclusion that at some point I will have a transplant, I just hope that by the time I need one the fantastic work of the Live Live Give Life team, whom I adore with all my heart, will have started to pay off and organs will be nice and easy to get hold of, if not little Edward-Tedward* may be in for the chop!!

If you haven't already go sign the register now online and MAKE SURE YOU TELL YOU FAMILY!!!

*Obviously I'm joking about Edward...I do hope that goes without saying!