The Mighty Logo

Life as a Personal Trainer With Cystic Fibrosis

The most helpful emails in health
Browse our free newsletters

I have been living with cystic fibrosis since birth. I was lucky that I was diagnosed early and started on medicine straight away. Both parent need to have the faulty gene for the child to have CF. Once both parents have the CF gene, there is a 1 in 4 chance that the child with have the illness.

Cystic fibrosis 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, people with CF can develop CF-related diabetes, osteoporosis, liver problems and many more complications.  

There is a brilliant campaign at the moment: the straw selfie. This is where someone takes a selfie with a straw in his or her mouth. You have to breathe through the straw with your nose blocked off. If you do this for 60 seconds, it will give you a small insight into what it is like to breathe like someone with cystic fibrosis.

On a day-to-day basis I had a medication to take both orally and inhaled, along with physiotherapy. With meals containing fat, I needed to take enzymes to help absorb the nutrients. Each morning and evening I would take medication to open up the airways before doing physiotheraphy for 20 minutes with a device called a Bipap. This device is a type of ventilator which helps open up the airway and loosen up the mucus clogging the lungs to get it off the chest. Following this I had an inhaled antibiotic as a preventative to keep my lungs from getting an infection. This was then repeated in the evening, following more medication in the afternoon.

It was also important to exercise my lungs to keep them strong and in the best shape they could be in. I am a personal trainer, so I enjoyed this aspect. I used to do 20-30 minutes of cycling daily, just as a preference, in the morning. In the evening, I would do resistance work for about an hour, or some Pilates. The fact that I have a good base of fitness has helped me when I get infections in terms of my body recovering. 

man with cystic fibrosis taking the straw challenge

I was fairly healthy throughout my life. I played football up until I was an adult and was always in the gym. People see someone who looks healthy and don’t realize 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 at the gym. (Although I took this as a compliment.) CF is very much an invisible illness. 

Just as I started to break into the fitness industry, my health declined. In the last two years I was in the hospital every two months with an infection. My lung function started to decline, and I lost 33 pounds. In January one of my lungs collapsed. I was then started on the process of getting onto the lung transplant list. With CF, both lungs have to be transplanted; if one lung was transplanted then the “CF lung” may infect the new lung. 

On August 24, I got the gift of two new lungs from an amazing donor whom I can’t thank enough. With my good base of fitness work, I have recovered quickly from the operation. I will now 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 six weeks post-transplant now and doing extremely well. I seem to be the exception when it comes to exercising; the exercise 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 three months, I have to be careful about a few things. I can’t eat takeout, as I have to be careful about getting food poisoning. I’m not allowed drive in case I’m in a crash because the chest still has not healed properly. I can’t take public transport or be in a crowd of more than two or three people due to the risk of infection. The fewer amount of infections I get, the longer the lungs will last. Once the three months are up I hope to slowly get back into the gym and working. My main aim is to get back to personal training and begin working with athletes/sports teams.     

family at sister's wedding

If there is any wisdom I could impart, it’s to get out and exercise if you can. Our bodies can do amazing things, and I know the amount of effort I put into getting my body right before the transplant has helped me recover extremely quick. Imagine what you can do with a healthy body and exercise.

Editor’s note: Please see a medical professional before starting or stopping any medications or taking up an exercise regimen. This piece is based on an individual’s experience.

Follow this journey post-transplant back to personal training by liking Luke’s Facebook page transplant2trainer, or you can follow on twitter (@lukedotsey) and Instagram (transplant2trainer).

Originally published: October 7, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home