I HAVE BEEN living with cystic fibrosis since birth.
I was diagnosed early as my sister already had cystic fibrosis (CF). One in every 25 people carries the CF gene, with both parents needing to have the faulty gene for the child to have CF. Once both parents have the CF gene, there is a one in four chance that the child will have the illness.
I’ve been lucky enough to receive a pair of transplanted lungs. I wanted to share my story to raise awareness about CF and organ donation.
What is CF?
People see someone that looks healthy and don’t realise that they have a lot of health issues. People with CF get “but you look so healthy” a fair amount, especially in my case as I am a personal trainer.
It’s very much an invisible illness.
Ireland has the highest incidence of CF in the world, with roughly 1,200 adults and children diagnosed with the chronic illness. There are over 70,000 cases worldwide.
CF is a chronic illness which primarily affects the lungs and digestion.
There is a defective gene which causes the body to produce thick and sticky mucus. This mucus builds up and clogs the lungs which lead to infections. It also obstructs the pancreas and its absorption of nutrients.
Along with these aspects, CF sufferers can develop CF related diabetes, osteoporosis, liver problems and many more complications.
There is a brilliant campaign at the moment to help you understand what it’s like to have cystic fibrosis, called the ‘straw selfie’. This is where someone takes a selfie with a straw in the mouth. You have to breathe through the straw with the nose blocked off for best results.
Do this for 60 seconds and it is a small insight into what it is like to breathe like someone with cystic fibrosis.
Day to day requirements
I had to take vitamins daily due to bad absorption, steroids and antibiotics orally. With meals containing fat, I needed to take enzymes to help absorb the nutrients.
Each morning and evening I used an inhaler, Ventolin, to open up my airways, and then an antibiotic to prevent an infection in my lungs. I also used a nebuliser (a breathing machine) which helped to thin the mucus in my chest.
I did physiotherapy every day. I used a device called a bipap, a ventilator, to loosen up the mucus which is clogging the lungs and get it off the chest.
It is very important for the lungs that you get some exercise. I did 20 to 30 minutes of cycling daily – as a preference, usually in the morning. In the evening, I would do resistance work for about an hour, or some pilates.
The fact that I had a good base of fitness stood to me when I got infections, as my body was better at recovering.
Transplant
In the last two years, I ended up in hospital every two months with an infection. My lung function started to decline and in January I collapsed one of my lungs. I then started the process of getting onto the lung transplant list.
With CF, both lungs have to be transplanted: if just one lung was transplanted then the CF lung would infect the new lung.
At the end of last month, I got the gift of two new lungs from an amazing donor who I can’t thank enough. With my good base of fitness, I recovered quickly from the operation.
From now on, I will be on immunosuppressants so that I don’t reject the transplanted lungs, as well as medication to keep my new lungs in the best shape they can be.
I will no longer have to do physiotherapy but will continue to take inhaled medicines and enzymes with most meals. Obviously, as a trainer, fitness will be a huge aspect of my post-transplant.
If there is any wisdom that I could impart to other CF fighters, it would be to exercise.
A mix of both cardiovascular work and functional training is ideal. Doing 20 to 30 minutes of cardio daily can help keep the lungs healthy and help with lung function.
Some functional exercises such as squats are excellent to build muscle. This extra muscle can help to keep your body be as healthy as possible.
Luke Doherty is a 25-year-old personal trainer and cystic fibrosis fighter who has received new lungs.
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