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.

As a teenager I went to boarding school in Switzerland. I was there for about eight months and then I decided I wanted to wakeboard. Orlando is the capital of wakeboarding and I went to a camp there. I got hooked again. I used to eat, sleep and breathe wakeboarding. Everybody there was passionate about it. I stayed for a year.

In summer 2009 I was training in Orlando when I started to cough. I had a really heavy wheeze and I was coughing so much that I vomited. I had come first in the national wakeboard championships that June – I was doing my Leaving Cert and had a chest infection at the time.

I came sixth in the European championship in France and then I got really ill as I was preparing for the world championships in Korea. I decided to push it as far as I could. I am really glad I did it. I came ninth and it is really important for me that I got to do that.

My lung function had dropped to 70 per cent and at this stage I had MRSA and other bugs.

I lived in Holland for a while but when I felt really sick the penny dropped that I wanted to come home.

This is the best place to be treated even though I have seen conditions here which would be illegal in other places but the staff here are so sensitive and know so much. My consultant in Dublin has 200 patients. My consultant in Switzerland had seven. But I learn more from my consultant here in the few minutes I see him than I did from consultants anywhere else and I have had medical treatment in many countries at this stage.

It is such a relief to be in the Nutley wing and I am feeling a lot better. But I learn something every day and it is never anything good.

I am non-compliant as far as medication is concerned. I do whatever they want when I am in hospital but I have made a decision about how I want to live my life at home. Many people with CF spend two or three hours a day taking their medications, being nebulised, taking the inhaler. I know it is controversial but I would rather go home and live normally. I fought very hard for two years and I still lost 70 per cent of my lung function.

I take off my hat to all the people with CF who fight and do all the treatments but my attitude is that it might give me an extra year but I would prefer to go home and live normally. A transplant is not an option for me because of my bugs. That’s a difficult issue but I know it is not going to happen. If I had that option I might do things different. Maybe I will change my mind.

I was in peak physical condition and now I cannot walk up my own stairs. I cannot take a long shower. It is frustrating.

But I am getting such a buzz out of Breathe Boardwear. It gets me up in the morning. My father retired last year and he has set up the company with me. We call it “Breathe” for obvious reasons. I design board shorts, bikinis, vests and equipment for wakeboarding. We do a lot of T-shirts and hoodies as well. I design them and my father is the business brain and we have a great team.

I used to spray paint everybody’s board when we were on tour and if you gave me a pair of white shoes I would draw all over them. Shoes are still my big interest. At the moment it is all online but we will open shops in the States. I never wanted to make a profit from CF so 5 per cent of the profits are going to CF charities.

I know I will never get back wakeboarding. I miss it every day. But it’s a case of better to have loved and lost than never to have loved at all. I am a very realistic person and I do not expect to wake up one morning and be better.

But for CF in general things are improving and I am optimistic that they will find a cure. For myself, I make a very strong point of living every day to the full. I have made a decision about how I want to live but I don’t recommend that other people don’t take their meds. I am an extreme case.

I know it is hard for my parents especially when I get very ill but they are so supportive. They have been incredible. And it is hard for my 17-year-old brother. They threw an amazing party at home for my 21st birthday last June. I find it upsetting that I cannot travel now but they brought my friends from all over the world to me. It was like the United Nations in our house, just amazing. And they have also let my three best friends (Jill, Conor and Sandy) move into the house. I am so lucky with the people around me.

In conversation with Marese McDonagh

[ breatheboardwear.com ]