Wednesday, 7 November 2012

Negative thinking

Pup is off school today; he threw up spectacularly last night. I don't think he's really ill, but school demands that the kids stay off for 48 hour after they have upchucked, so here we are. I'm a bit disappointed, as I wanted to go over and see Mum, but happy for Pup, as he isn't too good at the moment, and a duvet day will be good for him.. He had his regular 2 monthly outpatient appointment yesterday, and they were reasonably pleased with him, but he does seem tired and washed out, and he's coughing a lot. His lung function has worsened again too. I'm wondering if he is ripe for more IV antibiotics. They've prescribed him a course of orals, so we'll see how that goes. 

It all bring home to me more and more that CF really is a degenerative condition. A 15 year old girl with Cystic Fibrosis died last month. One of many children unfairly struck down before they've had a chance at life. This one hit us, and many in the CF community really hard.

Why? We are all being conditioned to believe that CF'ers can expect a much longer life these days. We've come to expect it. Our Doctors stress the positives, they don't use the 'D' word. Median life expectancy is near 40. Medications improve all the time. They tell us that Pup could make 60, easily.

But the figures actually mean that half of all CF'ers will die before they reach 40. And that doesn't mean that they will live 40 fit and happy years and then die. They may be more disabled at the age of 20 or 30 than the average 90 year old, they may endure years of struggle, in and out of hospital. Waiting for a lung transplantlike the girl who died. Kept alive by intravenous antibiotics, feeding tubes, oxygen, endless pill popping.


I'm not just thinking of Pup. The CF Trust has a forum that links parents of CF kids, we get to know others on Facebook, you see their pictures, read about their antics, learn to care about them. We get advice from adults with CF, and read about their problems and worries. But we also see pictures of happy lively healthy kids. Those are the ones that keep us going, those and the stories of adults with CF running marathons, climbing mountains and achieving great things.

At least Pup is having a thoroughly good day, so far he's played on the Wii, his DS, done some online homework and is now deeply involved in a computer game. He is one real little techy.

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