Monday, 25 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 this request and said they'd try and see if he can manage off oxygen and the nippy, and see how he fares; if the result of the overnight 'experiment' was successful, to say, his sats didn't drop too low, he'd be allowed to forego his oxygen for one night and stay at his friends.

This is the part that pissed me off; when I was a kid and wanted to go to a friends house, have a sleepover, or if there was something happening where IVs would get in the way, the doctors always managed to schedule IVs so the fortnight would always include that one bloody day. I'd request that they started a day later, or after the weekend if it was a Friday, and I was met with 'No'. No bargains, no requests, just 'have your bloody IVs and get lost'. Or at least that's what it felt like. Moving to Adults was surreal as I can now request IVs when I feel I need them, say I don't need them if I feel fine (in paeds I got them every 3 months routinely) and if I want them ahead of or after a certain event, I can have them done that way. Being in control of my treatment for the first time was a shock to the system, but obviously it's something that was bound to happen as in adult care, you do have to agree with the treatment. That's also how I got them to change my IVs from tobramycin, the drug that made me deaf, to an alternative (colistin). In kids, I couldn't say I didn't want the drug or wanted something different, and as the doctors (there were 2 consultants) couldn't admit that tobra was the cause of my hearing loss, they kept me on the drug for a further 6 years. Spineless bastards. I do sometimes feel like throwing something at the doctor every time I pass him in the hospital.

All that aside, the programme was good, and it showed a really good insight to what its like for a kid in hospital, and got some awareness out for CF which was brilliant. And I have to admit it was a bit theraputic yelling 'TWAT!!!' at the TV screen when that doctor appeared.

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