Up The Farway Tree

Merry Christmas!

I was back in Newcastle for a pre-Christmas check up.  Results were ok-ish.   Lung function was down a little again (2.26 litre from 2.39) which was a bit disappointing...but could have been much worse.  The doctor felt that since I was feeling well and had also recently had sinus infection (which might have caused the drop) then he was happy to leave it for 2 months and review.   He didn't feel it was time to proceed to radiotherapy, which was good!  He said that the pattern of slow decline at moment indicates this is not an aggressive rejection, where things just plummet downwards.  Although the expectation is still for gradual decline, I might also have periods of plateau and they will still progress to radiotherapy if looks like my lung function is dropping to point I am becoming symptomatic.   At the moment it is still 86% (was 109% at start of this year) so I don't notice any difference on a day to day basis - I don't feel breathless at all.   I am very fortunate that I had such a high lung function post transplant as it is buying me more time in this process!

I have ENT appointment this week about my sinuses so will see if there any further thoughts on surgery.   The gastric tests so far have been fine - I've had a barium swallow and endoscopy.  I still have a PH test in January (they put nasogastric tube down for 24 hr which will measure any acid reflux).  I think it's looking like my previous surgery for reflux is still working, which is good news.

I have been feeling very anxious about the whole process though.   I think it's the sense of something not being in my control, and that no matter how hard I try, I have little influence over the progression.   Pre-transplant my CF lungs were unpredictable but my lung function varied day by day, depending on infection levels, so there was always a feeling that it might go back up at the next appointment.  I am finding it hard to accept the irreversible nature of this process.   However, the difficulty with CF lungs was how awful infection made me feel - at the moment my lungs are infection free and therefore I actually feel very well.   So I think all I can do is make sure I am otherwise as fit as possible, so that by body copes with any drop in lung function.  Within my control are the general looking after my self principles - I must remember to stick to these!  

I need to look at this whole process as just another part of the journey.  I don't want to spend the time between appointments getting  increasingly anxious and fretting about what the next result will be. At the moment I do feel well - and I really must make the most of that.   Life marches on regardless and I would hate to look back and think I spent far too long worrying!  It certainly doesn't achieve anything.  I have to concentrate on the fact that things might remain stable for a good while  and I will deal with each hurdle at the time.  

Health aside - it's only 6 sleeps until Christmas!!!!!!!!!   Estelle is very excited - but I think I am still more excited haha!!   She has asked Santa for a dolls house.   I quite like the idea of playing with a dolls house too.... :-)     I am looking forward to spending lots of time with my family over the festive period.   I am forever grateful for my wonderful friends and family who support me at every turn, and I am of course, forever grateful to my donor for giving me another Christmas to celebrate!!

Hope everyone has a  magical Christmas!