Up The Farway Tree

Annual Review...results now in!

No rejection detected at bronchoscopy, everything looked fine. Lung function was 2.73 litres, which equates to 99.7%!! I am going to get 100 one of these days ;-) X-ray looked fine, BP was perfect and oxygen levels 100%. Can't really ask for a better report!

The bronchoscopy itself was not too bad - I don't remember a lot. I do remember the 3 attempts to take blood and the 4 venflon attempts - but it still doesn't beat the 10 venflon attempts last time! She said I should wear gloves in the waiting room to keep hands warm - I told her I was wearing 2 jackets, gloves and a scarf in the waiting room!! Might try those hand warmers for next time. I believe I may have had 18mg of midazolam which is an all time record. It was given in 2 lots, which would suggest I became a bit chatty mid bronchoscopy. This sounds familiar. I was probably just making small talk ;-) I slept for a good few hours (funnily enough) but when I woke up was desperate to escape the ward. I asked the nurse looking after me, who said that was ok - so we headed to Pat's and spent the afternoon there before coming back about 7.30pm. I went to see Louise and mum took my stuff up to the ward - where she met the doctor. The very angry doctor. I was supposed to have had an x-ray (oops, forgot about that) so the nurse shouldn't have let me go. They had been looking for me all day! Mum then ran down to the ward Louise was on to send me back up, but when she got there the doctor was also there -who then thought I had been in Louise's room all day. I then totally enraged her by asking if the porters could not just get me from Louise's room so I could stay and chat! After a rather incredulous look, she did actually phone radiology and tell them where I was - I think she realised it might be nice for Louise to have a visitor hehe. It was lovely to have a good chat with Louise and we talked about all sorts and the time flew in. She is still struggling a lot just now and back on 24hr oxygen and having problems with her heart at the moment, which they are trying to treat. Keep the good thoughts coming and I hope a period of stability is not too far ahead now.

My CF doctor had written to the transplant consultant about restarting one of my antibiotics (azithromycin) because it has anti inflammatory properties which may help the sinuses and joints. The transplant doc was a little reticent as they tend to keep this drug in reserve should I later develop chronic rejection (very different to acute rejection, and tends not to occur until after the first year). He decided however that I should trial it at a low dose because there is a balance of relieving my current symptoms and thinking about the future. If it doesn't work, then I stop it but if it helps I can carry on long term. I asked about reducing my steroids but they are not keen to do this at the moment (mainly due to having rejection in past) so everything is really to continue as before.

We then had to dash over to the other hospital to see the surgeon about wound pain. He is sure there is no hernia but is a bit puzzled by me. There are a number of possibilities - he can feel the permanent stitch under the wound and it appears to have become knotted, but he didn't think that should cause as severe pain. It could also be due to adhesion's (scar tissue) or the pain might be getting referred from somewhere else - abdominal pain is hard to localise as you often feel it in an area remote from the problem! My peg tube wound is a likely suspect as he tells me that it was extremely inflamed around the stoma so he removed copious amounts of muscle, which he would expect to be sore! Alternatively it could be pain from stomach. Because the pain comes on after eating, the first step would be to do another endoscopy and look into the stomach. He could do this very soon but unless the pain gets much worse I am going to wait until my next outpatient appointment in 3 months because I just need a break from procedures at the moment and I am kind of hoping it all just settles down (as is he!) I can just call if I want it made sooner though.

So, I am now back at mum and dads and Andrew is coming to pick me (and Seb) up after work. I am so so tired after a hectic few days and getting virtually no sleep in hospital last night, so straight to bed. Then work tomorrow.... !