PKU Journal

August 27, 2007 - Blood phenylalanine levels for this month were 720. I'm quite pleased with that. October 22, 2007 - Blood test results for this month were 920. I'm pretty bummed out about that. December 1, 2007 - Today is the beginning of the rest of my life. how many times have I heard platitudes like that? I'd love to be able to start each day by looking in the bathroom mirror, recanting the mantra and actually mean it. How about 'Fake it 'til you Make it' Is the brain so easily tricked? Having PKU is something I've largely been able to ignore as an adult, but now it feels like it's coming back to bite me. As the title suggests, I have recently turned 40. I am also overweight, have PKU and now have a family precedent of type 2 diabetes. Last week I went out to the PKU clinic at Westmead hospital, my first vistit in four years, or so I kept being reminded. In fact it had been so long since my last visit that my file had been sent off to some warehouse. Oops! It appears that there is no information available on PKU and diabetes ie adults with PKU developing type 2 diabetes and the management thereof. I can't accept this, it just can't be right. It has to be out there somewhere, right? Into the bargain my GP has been labouring under the misconception that adults don't in fact have PKU at all. Babies, yes. Children, yes. Adults it would appear not. Am I supposed to have died when I turned 18 or should I feel cheated that I didn't managed to somehow grow an extra liver enzyme? It's like saying that I can wake up tomorrow morning with different coloured eyes. Anyway, the GP consulted with an equally uninformed colleague and a dietitian, neither of whom (surprise surprise) had come across an adult with PKU. Therefore, they were all right and I the stupid patient must be wrong. I'm still not quite sure why I didn't get up and walk out right then. Since I have been to Westmead, however, he is starting to change his mind (since another medical professional has confirmed my diagnosis. He even asked if he could borrow my PKU Handbook, which I took as a good sign. The handbook is very general and he'd probably be better off Googling PKU instead. I told him what had been discussed at Westmead ie weight loss, diabetes etc and that there doesn't seem to be any information available. He might have a better time Googling it than me, I don't know what the hell I'm doing. I asked 'shouldn't I get on the scales or something?' He agreed but said that he didn't want to ask me. Was he trying to save me the embarrassment? They told us that I am about six kgs over weight. I'd just finished telling him that I thought I'd gained between 15-20 kg since arriving here. One of us in the room is definitely deluded, my money's on the smart looking scales - good looking but not too smart. I decided that the first of each month should be blood test day, that should be easy to remember even for me. I don't hold out high hopes on a good result, given I've been sick with what I affectionately call a sinus migraine - feels a lot like a migraine but in your face and ordinary headache tablets do little to move it. This means that I haven't been eating much, but having decided that today was the day I went ahead anyway. Just think, this time next month it will be a blood test on New Years day. Now that sounds like a bit of a dumb idea.