Me & My CF

Brief Description 
CF stands for Cystic Fibrosis. It's an inherited disease that shortens a persons life expectancy to around 31 as there is not yet a cure. Cf affects the lungs, digestive system, sometimes bowels, bones, fertility, and occasionally the liver. A typical person with CF would be short, on the skinny side and sound like they have a bad smoker's cough.

My Experience
Each individual has a different experience of CF. I've read and heard some shocking stories and I think I have been fortunate in my life so far.

When I was born my mum said she instantly knew something was wrong and thought of CF. She's a nurse and her twin sister had not long before had a baby girl who had CF; sadly baby Harmony died just 9 months old <3. When babies are born they have their 'first poop' which apparently is gross!!! I hadn't done mine within a day so I had an urgent operation at 2 days old where they found out I had a blockage in my bowels. This is one of the early signs of CF and I was diagnosed.

I was very lucky to be diagnosed early as that meant that he docs could start treatment instantly. My parents were very good too, as they NEVER let me miss any of my tablets or physio (at the time I was mad at them for making me do it, but now I look back, they saved my life!)

Due to this, I only had hospital appointments, no admissions- up until I was about 12. I remember it so well as the day that EVERYTHING changed! I went to the farm (I know I was a little too old but it was one of my favourite places in the world at that time!) and played in these hay bales. From that I contracted a bug called pseudomonas. It is a horrible bug to get, especially for a CF sufferer as it will probably never go away from the point you get it so you have a constant battle, which sadly, you know deep down that it's a loosing battle. Then a few days later at school I had sharp pains in my chest and couldn't breathe, an ambulance came to pick me up- which was pretty cooool! ;) This has led to numerous hospital admissions from then on.

I think I have come a long way since my first hospital admission! When I first started having them, I refused to talk to anyone except my family, sat in bed in my pj's all day and all night, screamed whenever I saw a needle, and generally made the doctor's jobs even harder. Back then I didn't understand how important hospitals are for people with CF.

Now, on the other hand, I tell the docs everything, have bloodtests, blood sugar tests, and a port! I went through some counseling to help me get over my needle phobia and it worked! My health is getting back on track finally and I've accepted that I gotta look after my CF to stay well.

1 comment:

  1. You're story is so much like mine!!!! Other then I recently (over the past year ) my lung function declined to around 30%.. & my overall health plumitted ', in the little time its been, in just 1 year everything changed. And never look at getting an actual lung transplant in just the next few months it's pretty scary but it's exciting at the same time I know I definitely want to be able to have the new ones & breathe again n to add more life on to my original lifetime , which would have been a years ago if I had stop fighting. But I am and I am determined so I'm coming in this prepared while I'm in I'm going to fight through this because im a fighter just like you!!! Your so lucky and I just hope that you don't take any of your breaths for granted because you're very lucky right now but things can happen in the blink of an eye and I was by far ready for this things can go wrong so don't quit tryin and keep doing everything you can to keep your precious lungs working:-D