A transplant is not an option
MY HEALTH EXPERIENCE:I fought very hard for two years and I still lost 70 per cent of my lung function, writes CIANNE NAJI
I DON’T think I Googled cystic fibrosis (CF) until I was 17. I had been diagnosed at two when I got pneumonia and that was the only time I had chest problems for many years. My parents did not believe in wrapping me in cotton wool which was the norm then. They opted for a hippy route and encouraged me to take up sport to keep my lungs exercised – which is recommended now. So I forgot I had CF. I actually used to smoke.
My dad was big into surfing and he got me into water sports. We used to have a caravan in Brittas and I loved the water. I was really young when I started wakeboarding – I stood up when I was six and I was hooked.
Looking back I wish I had Googled CF a bit earlier just to be more prepared. It turns out it was bad for me to be around horses and I did a lot of horse riding. When I started to get sick first I had no idea what to do. It was a big shock. My parents obviously knew I had CF and how serious it was but I was a child and they did not want to start talking to me about issues like life expectancy. I was angry with them for a while but I think now I would have done exactly the same thing. I would have panicked as a child if they told me.
I am in the new CF unit in St Vincent’s at the moment but I was in the hospital for a week before it opened.
I had to call an ambulance at 5am one night as I had a lot of pain in my side. With CF there is always a fear that your lung could collapse. Because I came in an ambulance I ended up in AE. There were five other people with CF there. In our eyes that is unacceptable. I have MRSA and am highly contagious to other people with CF. I have had MRSA for four years now.
The problem with CF is that you have bacteria living in the lung and it is very hard to get rid of them. I am a threat to anyone else with CF. I have never actually met another person with CF face to face. That is difficult. If you have diabetes, for example, you can join a group and meet other people and talk things out but if you have CF, you can’t risk it.
The new unit is amazing. There is even an intercom system where we can talk to each other and I am dying to try that. We have lost a lot of people with CF along the way and in a way this is for them. It has been a long struggle.