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Showing posts from August, 2014

Kids with Cameras

If anyone was watching the 3 part series that was on ITV 1 the past few weeks, they'd have seen the last episode which was aired last Thursday, and it had a 13yr old boy with CF in the episode. It was filmed in the RVI, the hospital where I'm treated, and the CF doctor who appeared for a couple of minutes was one of the doctors who treated me as a kid. And I have to admit that little section of the episode, severely pissed me off.

I remember as a kid, I wasn't spoken to. I was spoken at, or about. But no one talked to me, explained much, or involved me in decisions. The kid in the episode was a lot more ill than I ever was, and needs oxygen overnight, and a nippy which is like a non invasive ventilator, and it pushes air into your lungs, it's usually given to people who don't breathe properly overnight, or those with sleep apnoea.

The boy in the episode wanted to be off oxygen for one night, so he could have a sleepover at his friends house. The doctor listened to…

I think a tumbleweed just passed by my blog

Another 4 monthly update *twiddles thumbs* Poor neglected fucker.

Okay yes, I'm crap at the updates. I have nothing new really to report. And in all fairness, whilst I was in the beginnings of the lumacaftor/ ivorcaftor trial, I wasn't allowed to really talk much about the progress unless it was to close friends and family - there was a contract of sorts I had to sign, several times through the months every time one single word was changed, and it asked everyone not to post things on public forums or talk to strangers about it, simply just so that false information isn't put out there, and people don't get disheartened or get their hopes up. Results have now been posted and everyone has either finished taking the drugs or progressed onto taking the real drug (for definite - as there were three groups and only one group was taking both real drugs, rather than placebo or a real/placebo combo) so now I'm allowed to open my abnormally large gob about it.

If you rememb…