Up The Farway Tree

Greetings from Newcastle

Had a really good clinic appointment today with an all record high on lung function of 2.91 L, which is 103% of predicted. woohooooo!! I know someone is going to ask how I can get over 100% so here is quick explanation. For my weight and height they calculate a 'predicted' lung function based on results from a healthy group of people of the same weight and height. So for example, 2.8 L might be the average for my height and weight group - so if I blow this I get 100% predicted - if I blow a bit more than this then I get a result over 100%. Generally anywhere from 80-120% of the predicted value is considered normal. Lesson over ;-)

I have also put back on the weight I lost after the surgery in January. This has mostly gone back on recently since I started the Gabapentin for my sinus pain (it is a known side effect) but as long as I am back to where I should be then it's a good thing. Blood pressure and oxygen saturations were all great. The Prof was delighted with my results and takes great pleasure in showing me graphs of my lung function which keeps climbing. I guess it has to plateaus some time! He has also said I can reduce my prednisolone (steroids) now, which I am so pleased about. This will help reduce the longer term problems steroids can cause and I hope will also reduce some of the hamster face qualities :-)

I also asked about my kidney function as the GP keeps getting twitchy about it being a bit borderline. He said that nearly everyone takes a drop in kindey function after transplant (due to anti rejections) but that is normally plateaus - and that mine has been relatively stable since the end of last year. They will watch it closely and intervene if it gets any worse but he is not worried at the moment. Phew. I mentioned the joints as well, in particular my hip, which is driving me mad as it is really quite sore. I am seeing the physio next week but he wants it x-rayed in case it is something other than CF related arthritis. Will get onto that when I get home. I have to go back in three months as usual but should move to 6 monthly appointments soon!

After clinic I then had to head over to the other hospital for my endoscopy - this was mainly to see if the cause of my abdominal pain could be determined. The scope didn't show much other than some food stuck - which indicates the wrap they did (bit of gullet around stomach sphincter) is still quite tight - which is why I still have some problems swallowing at times. This may well still slacken off and since I still get some reflux there is no point intervening. Otherwise things looked fine. He said the pain I describe (a stitch like pain when walking after eating) sounds more vascular and related to the small bowel - which he didn't touch when operating. We have agreed to just see how it goes over the coming months but if it really doesn't settle down I can get back in touch and get some x-rays done (small bowel series for medic friends). I am happy that he has not just dismissed me but on the other hand it is so so frustrating to have this pain - it was a real nuisance on holiday when it's nice to go for a meal and stroll home (or not as the case may be!) Hopefully it will just settle on it's own.

I am now back at Pat's and we are staying tonight since I had sedation earlier so was pretty tired so better to head home fresh tomorrow. I'm sure wee Seb will be wondering where I have been as he has just stayed with Andrew this time, since the dog walker was coming today and tomorrow. Apparently he was just sitting at the front door last night watching and waiting for me to come home. Wee shame!

It's been a tiring day so off to bed for me now...