I have been living with Cystic Fibrosis since birth. I was lucky that I was diagnosed early and was immediately started on medicine. One in twenty-five people carry the CF gene, with both parents needing to have the faulty gene in order for the child to have CF. Once both parents carry the CF gene there is a 1 in 4 chance that the child will be born with the illness.
Cystic Fibrosis is a chronic illness which primarily affects the lungs and digestion. There is a defective gene that causes the body to produce thick and sticky mucus which builds up and clogs the lungs which can lead to infection. It also obstructs the pancreas and its absorption of nutrients. Along with this, CF people can develop CF related diabetes, osteoporosis, liver problems and many more complications.
There is a brilliant campaign at the moment which is 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.
On a day to day basis I have to take medication both orally and inhaled along with physiotherapy. With meals containing fat I need to take enzymes to help absorb the nutrients. In the past, I have spent each morning taking Ventolin to open up the airways before I did physiotherapy for 20 minutes with a device called a Bipap.
This device is a type of ventilator which helps to open up the airway and loosen up the mucus which is clogging the lungs to get it off the chest. Following this I have an inhaled antibiotic as a preventative to keep the lungs from getting an infection.
This was then repeated in the evening with following another Ventolin in the afternoon. It was also very important for the lungs to be exercised to keep them strong and be in the best shape they could be. I am a personal trainer so I enjoyed this aspect and I would do 20-30 minutes of cycling daily. In the evenings, 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 in terms of my body recovering better.
Personally, I was fairly healthy throughout my life. I played football up until I was an adult and I was always in the gym. People see someone that looks healthy and don’t realise that they have a lot of health issues on the inside. People with CF get “but you look so healthy” a fair amount especially in my case as I went to the gym. Although I took this as a compliment, it’s very much an invisible illness.
Just as I started to break into the fitness industry my health declined. In the last 2 years I ended up in hospital every 2 months with an infection, my lung function started to decline and I lost 15kg in weight.
In January, one of my lungs collapsed. From there I began the process of getting onto the lung transplant list. With CF, both lungs must be transplanted as the CF lung will only infect the new and healthy lung.
On August 24th I was given the gift of two new lungs from an amazing donor who I can’t thank enough. With my good base level of fitness, I have recovered quickly from the operation. From now on, I will be on anti-rejection drugs and medication to keep my new lungs in the best shape they can be. I will no longer have to do physiotherapy with the Bipap but will continue to take inhaled medicines, oral medicines, and enzymes.
Obviously as a trainer, fitness will be a huge aspect of my post-transplant recovery. I’m 6 weeks’ post-transplant now and doing extremely well. I seem to be the exception when it comes to exercising as the exercise that they want me to do is too easy but until my chest heals from the surgery I am not allowed do much more.
For the first 3 months of recovery, I have to be careful with a few things. I can’t eat takeaways as I have to be cautious about getting food poisoning. I’m not allowed drive in case I’m in a crash because the chest is still in the process of healing. I can’t take public transport or be in a crowd of more than 2-3 people due to the risk of infection. The fewer infections I get, the longer the lungs will last.
Once the 3 months are up I hope to slowly get back into the gym and get working. My main aim to get back to personal training and begin working with athletes and sports teams.
If there is any wisdom that I could impart, it would be to get out and exercise. Our bodies can do amazing things and I know that the amount of effort I put into getting my body right before the transplant has helped me recover extremely quickly. Imagine what you can do with a healthy body!
Written by Luke Doherty, (25) CF fighter who has received new lungs.