The CF Stuff

The CF Trust website says about CF:

"Cystic Fibrosis (CF) is the UK's most common life-threatening inherited disease. Cystic Fibrosis affects over 8,000 people in the UK. Over two million people in the UK carry the faulty gene that causes Cystic Fibrosis - around 1 in 25 of the population. If two carriers have a child, the baby has a 1 in 4 chance of having Cystic Fibrosis. Cystic Fibrosis affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with Cystic Fibrosis.
Each week, three young lives are lost to Cystic Fibrosis. Average life expectancy is around 31 years, although improvements in treatments mean a baby born today could expect to live for longer."

Having CF affects almost every part of my life in some way or another, and I'm going to try to explain some of that on this page.

My day starts with taking over 25 tablets which do a host of things for me which my own body can't. It ends with over 15 more, and inbetween I take at least 5 nebulisers, several insulin injections, up to 30 enzyme tablets to help my digestion, a few different liquid medicines, a LOT of different painkillers including a permanent morphine syringe driver for my chest pain.

I also test my blood sugars 3-6 times a day by doing a fingerprick test, and do some form of chest physio twice a day. Usually I do a type of physio called Autogenic Drainage which consists of breathing at different levels of the lungs to try to move the gunk up and out. Other times I might use a PEP mask, Flutter or Acapella which are gadgets that I breathe into. They then create a pressure against the breath which loosens that stuff up down there. If my chest is really bad I use percussion which is patting hard on different areas of my chest.

When I visit my CF clinic at hospital in Southampton I do tests to measure my lung function. The FEV1 is the amount of air I can blow out in the first second of the test, and FVC is how much air my lungs can hold. Each of them is measured in a percentage of what a "normal", healthy person of the same age, weight and height as me could do.
My latest FEV1 results are posted at the side of my blog.