'Life is a white-knuckle ride with this illness' - Personal trainer (28) living with cystic fibrosis
28-year-old Luke Doherty has cystic fibrosis. He has suffered infections, a collapsed lung, and he has had a double lung transplant. Luke, from Ballinteer in Dublin, writes about living with cystic fibrosis ahead of 65 Roses Day which occurs tomorrow
My life with cystic fibrosis (CF) has had lots of twists and turns, not unlike the white-knuckle ride which was the Alton Towers’ Nemesis roller-coaster I hopped on as a young boy. I’ve had infections, a collapsed lung, and a double lung transplant. To cap it all, I’ve even had chemotherapy.
My older sister had been diagnosed with CF so when I was born, I was tested immediately. Unfortunately for me, I also had it. Growing up, the daily routine of chest physiotherapy, nebulisers, and numerous medicines were just part and parcel of daily life. It did have its upside in that I could eat all the food I wanted. You see, with CF the body needs to work harder to breathe so we need 50 per cent more calories. There have to be some advantages, right?
I played a lot of football growing up and loved being active. After my Leaving Cert, I decided to undertake a three-year Personal Trainer and Sports Therapist course at Sallynoggin College of Further Education.
This also marked the beginning of when my health started to decline - in both my second and third years I ended up getting pneumonia. On finishing that course in 2013, I started a degree in strength and conditioning at Setanta College, while also working part-time in different gyms.
Around the same time, my infections were also becoming more routine – a sign that the CF was progressing. My lung function was only 24 per cent which was worse than trying to breathe through a straw with a nose peg on. I was being admitted to hospital every two months.
By December 2015 one of my lungs had collapsed and it would never recover. My health was becoming like a game of dominos. One problem would lead to another to the point that a lung transplant was my best option for survival and, after a process of assessment, I was put on the transplant list.
The following March, having been stable for a while, I was discharged from St Vincent’s Hospital in Dublin. While I felt good and my oxygen levels were OK, having just one lung – itself only partially working – there was a danger that if I got another infection, I would have nothing left to work with.
Skip forward to late July when the worst-case scenario happened. I got a lung infection. It was back to St Vincent’s Hospital.
It was rough I gotta tell you. I found it harder than ever to breathe. I was on litres of oxygen and honestly didn’t know if I would ever leave hospital. My anxiety kicked in. One night I had an anxiety attack so bad I asked to be sedated. My nurses were great. Every time they left, my anxiety flared up and I couldn’t go a minute without someone trying to calm me down. It was weird because my vital signs were normal. I was just hyperventilating.
By mid-August 2016, I had recovered sufficiently to go home. The night before I was due to be discharged, a nurse who I fondly referred to as “mama bear” – she was so protective of me – came in to the room to tell me that the Mater Hospital had been trying to reach me. They had a set of lungs. I had to answer the call to accept them, but I had limited mobile phone coverage in my room.
I got in touch with them straightaway. We headed off to the Mater to get ready and to see if the lungs were viable. In the ambulance my nurse couldn’t understand why I was so calm, but I was just treating it as a dry run, not thinking it would go ahead.
At 5am the next morning, I was told the surgery was happening. I texted a few friends to let them know. I figured I would either wake up with a new set of lungs or I just wouldn’t wake up.
24 hours later, I woke up. Everything had gone to plan. One week on, all the drains were out and, on day 12, I was allowed home. Slowly but surely, I would get stronger and my lung function would improve.
Just before Christmas, I was finishing up a gym session when I got a call from the hospital. They were concerned about one of my tests. A small percentage of transplants can develop PTLD or post-transplant lymphoproliferative disorder, which can be cancerous. In typical “Luke-style”, I was one of the unlucky ones. Thankfully they had caught mine before it had gotten to that stage, but I would need chemotherapy.
However, before that could happen, I would have to go back to hospital to recover sufficiently and build up my strength to be able to cope with the chemo. Three months later, I was discharged, well enough to start on six rounds of chemotherapy as an out-patient. At the same time, I hit the gym. It not only helped to keep me sane but kept my body strong and able to deal with the chemo.
Fortunately, at the end of it all, the PTLD had been reduced to low enough levels that it was undetectable in blood tests.
Throughout all of this, I kept going with my degree and am delighted to have qualified in early 2018. I have also now set up my own strength and conditioning business, and am involved with youth development academies, as well working with national and international athletes across various sports.
I strongly believe that having a “never give up” attitude, a by-product of living life with CF, can really help bring you through the tough times. It certainly worked for me.
Cystic Fibrosis Ireland’s 65 Roses Day takes place on Friday, April 12, and people can support by buying a purple rose for €2 or donating online at 65RosesDay.ie