Thanks for the feedback and thoughts on my last post. Always interesting to read other people’s experiences and beliefs on the matter.
Last night I did another talk, I am doing quite a few now and trying to approach different groups in order to raise more awareness. This one was at a Bupa hospital, and was kindly set up by a friend of mine, who I met many years ago in hospital not through CF but through similarly dodgy lungs all the same.
The talk went really well. They were a lovely group, I was slightly more nervous than usual as these were health professionals so of course my marvellous “and then it went a bit deflatey and sat at the bottom of my chest cavity stubbornly” explanations wouldn’t really do. They had covered all the tables in pink paper (woo!) in my honour too. I did my usual blurb which is to run through my life really, throwing in facts about CF and about organ donation along the way. I love public speaking I really do, but I still haven’t quite become used to making people cry. It makes me feel sad watching them but I know that it means I am getting the severity of the situation across and also that luckily for me my “story so far” has a happy ending. A group of them are running the 10k soon to raise money for Foulis ward, which I spent many many months on as many pwcf do so click here to sponsor them.
I finally heard back from Harefield. I had a CT scan last week to investigate my Wheezy Penguin Syndrome. Essentially what they thought they would see (sciencey goggles on please) is evidence that at the join of the new lungs onto my windpipe, the scar tissue had got completely over excited and over accumulated causing a partial blockage of my airway which would make a wheezey sound like I currently have. Weirdly the CT scan showed no such behaviour, so now I am booked in for a bronchoscopy and possible biopsy to examine things further. I told my mother who put on a pouty face somewhat similar to mine and decided flatly that I could not be spared for a night or so. Good to see where I get my mature streak from then.
Am not too worried, apart from obviously the dreaded ‘R’ word which does crop up when pondering over what it could be. Still I have had a general anaesthetic more times than I have had hot dinners, and it will be kind of nice to be a patient at Harefield and actually be able to walk over to the canteen! Plus A is going to drive me up there on Monday night and we are going to go to a gorgeous little restaurant in the town that I have never been to. So anyway it won’t be a big deal, will let everyone know how it goes once I am back. At least I am only missing rain rain and more rain…
Organ donation week 2017
2 weeks ago