Wednesday, September 9, 2009


I've been meaning to post something like this for a while...Kudos to Jo for reminding me.

I was diagnosed when I was 9 thanks mainly to the persistence of my mum and to the doctor who finally decided not to fob us off and referred me for an x-ray. From the x-ray they thought I had TB so they put me in an isolation ward for a month, when the TB test came back negative they did the allergy scratch test. Finally they did the sweat test, and on the second sweat test I was diagnosed. Looking back all the signs were there; every winter I would pick up a cold and it would stay on my chest for weeks or months, I would produce sputum by the bucketload. From the age of 7 I started to lose weight noticeably. When I was a toddler my mum frequently complained to the docs about my farts smelling wrong and I used to get the runs from time to time, presumably because of the amount of undigested fat in my system.

This was back in the 70s, and in those days no one had heard of CF, The yellow pancease tablets (Pancreatin? I honestly can't remember the product name) were rubbish, and the wisdom then was to go on a low fat diet (skimmed milk and no chocolate, is it any wonder I rebelled? ;-) I was also put on regular Flucloxacillin, which I more or less take to this day.

I think back in those days I had mainly Staphloccocus on my lungs. It wasn't until about 12-13 that I remember the word Pseudomonas being used regularly by the docs. I generally went into hospital for IVs about 3-4 times a year. The doctor would first give me oral antibiotics but when they invariably didn't work I was put on IVs through a cannula (the cause of many a trauma, although thankfully they always did the job in clearing my lungs) As a kid I can remember thinking/feeling that my health was sliding, but halfway through secondary school my health seemed to stabilise, I think this was down to a combination of Creon becoming available -which helped my weight gain, coupled with teenage testosterone kicking in which helped me with exercise (I should probably give the hospital credit here for the IV courses as well, although they weren't appreciated at the time as you can probably imagine). I seemed to get better at sports, took part in the 10K a couple of years running. When I was 16 the doctor let my mum do IVs at home. I have always done IVs at home since then. When I was 18 I was referred to the fledgling Manchester CF Unit, then in Monsall Hospital.

When I was 25 I got hospitalised a couple of times with major DIOS gastric blockages. The second time was quite scary as I was in for a month and it didn't seem to clear and surgery was mentioned. Thankfully it eventually cleared. The DIOS was caused partly because my pancreatic function was declining and had finally reached the point where Creon 10 was no longer working properly, I switched to Creon 25 and things gradually got better. I also started taking salt tablets, especially in the hot weather. Over the years I've become quite good at spotting the early signs (stomach pains) of DIOS and hit it with the Kleanprep early doors.

And that's it really. I'm now 37. I still have IVs about 3 times a year. I got married when I was 27 to a wonderful woman. We tried IVF for 5 years but it wasn't to be, so we decided to go through the donor insemination route and now have two beautiful kids, 1 and 4. Luckily my LF has stayed pretty stable throughout (it's about 80% atm). DNase made a big difference to me day to day in reducing the sheer volume of mucus produced, I also do Colymycin twice daily. I have no idea how I would do nebs without the Ineb, as it allows me to run after toddlers while inhaling. I think my health has been more stable when I have more weight on; I look back at some of the photos when I was a student and I look scarily thin, I feel like going up to my skinny-ass younger self and saying "eat some pork pies."

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