Up The Farway Tree

Annual Review

I had my annual review at CF clinic on Tuesday - kind of like a yearly MOT. In some ways I didn't see the point because of the shiny new lungs but then I still do have CF and all it's other problems! My lung function was 90% (it always reads lower on their machine) and chest sounded great. I did well on my exercise test and didn't get out of breath at all! The main issues we chatted about where the problems swallowing and stomach issues. I am eating solid food again but still finding food sticking at least a few times a day, which is irritating to say the least. I had lost a bit more weight (I was 48.4kg the day of surgery and am now 43kg). Facially I don't look as if I have lost anything but I had to go and buy some kids jeans the other day because even my size 6 ones were loose. Now that is just wrong! However despite the eating problems I have also started to get reflux symptoms again...so there is no way the surgeon will want to slacken the wrap off. So I have been restarted on my anti-reflux drugs but at a lower dose than before - that seems to be helping with the reflux and I just hope with time I can eat a bit more normally again. It has just become a chore again which is frustrating. In the meantime the dietician is restarting some of my other supplements - bleugh - but better to nip it in the bud before I become a tiny rake again ;-)

We also discussed the sinus pain which is still pretty bad - and although I started on that other tablet I am still taking a lot of heavy duty pain killers every day. I am seeing the pain specialist next month again, but the CF consultant wondered if my sinuses had got worse because one of my pre transplant antibiotics had been stopped (azithromycin). This drug also has anti inflammatory properties and anecdotally appears to help quite a few CF people with sinus problems. It can also help with Cf related joint pain - which has also got worse since my transplant. So it might all be related. He is writing to Newcastle to see if they have any objections to be restarting this - so fingers crossed I get the go ahead and it actually helps!

Seb is acting very oddly this week (well more so than usual!) I had to go to CF clinic straight from work and since it was the annual review I didn't get home until 4pm - so he was on his own all day. He refused to greet me when I got in and was rather huffy all night. Then the next morning when I was leaving he hid behind the unit in the living room and refused to come out! I had to move all the furniture and physically lift him. Then yesterday when I went out he hid under the bed - so far under than neither me or Andrew could reach him, so we had to eventually lure him out with a sausage. Clearly he really objects to being left for more than a morning! Amusingly though when I got home yesterday there was no Seb at the front door. I came into the hallway - no Seb. I went upstairs and a very sleepy little dog was bumbling out of my bedroom. I must have left the door open and he had clearly had a lovely morning in my bed. I do mean actually in it - he had pulled back the covers to make sure he was well and truly comfortable. I made up for leaving him alone all day by taking him to the country park for the first time this year - it was such lovely weather today and so warm. He had a great time running around and sniffing and I felt much calmer and less tired spending some time in the sunshine.

The other thing I have been thinking about is that it is one year to the day that I had my false call (or pretend transplant as I like to call it). Click here for last years blog post ( 19th March 2008. ) That was one of the worst times in my life but it now seems like a distant memory and sometimes I think it didn't actually happen. It is so hard to believe the difference between that date last year and today. It is a million miles apart. It is good to look back from time to time and see how far I have come but even more important to keep looking forwards....