LUKE DOHERTY WAS diagnosed with cystic fibrosis (CF) when he was a baby.

He had a lot of medication to take as well as doing physiotherapy and using a nebuliser.

Despite this, he was an active child with a keen interest in soccer in particular. His lung function was at about 60-70% during much of his childhood. 

“Obviously I had to use a nebuliser and take medication but I never really noticed it, I didn’t know any different,” Luke recalled, adding: “CF gets worse and worse with age though.”

CF is Ireland’s most common life-threatening inherited disease. About one in 19 people are carriers of the CF gene and when two carriers have a child there is a one in four chance of the child being born with the condition.

CF primarily affects the lungs and digestive system and can greatly impact a person’s lifespan. Symptoms reported by people with CF vary significantly in severity from mild to debilitating.

The most common symptom is recurrent chest infection, which results in lung damage, with the majority of deaths occurring through respiratory failure. Many people with CF eventually need lung transplants.

There is a high prevalence of CF in Europe, with the highest prevalence in Ireland – which is almost three times the average rate in other EU countries and the US.

Luke’s love of sport continued into his adult life and he went on to study as a personal trainer and sports therapist. A few months after he qualified, his health started to decline. 

Luke, who is from Dublin, was in and out of hospital every couple of months, usually for weeks at a time. 

Collapsed lung 

In December 2015, one of his lungs collapsed. At this point his lung function was only at 24% so he entered into the process for a double lung transplant.

He was determined to keep studying and was doing a BSc in Strength and Conditioning while on the transplant waiting list. He said lecturers at Setanta College were very understanding and helped him move forward with the course at his own pace. 

“They were great, they knew I was in and out of hospital so were flexible with deadlines.

“As coaches, we can tell the person what we want them to and just show them quickly, rather than having to do the action a few times as you would as a personal trainer.”

Despite this, Luke said he was “wondering how I was going to do the job” as his lung function decreased. 

Transplant 

In August 2016, Luke got a call at about 9.30pm one night saying a potential donor had been found. He wasn’t expecting the news and, being aware of other people’s experiences, though it might be a false alarm. 

I genuinely didn’t think too much about it, I treated it as a dry run but wasn’t sure that the surgery was actually going to happen.

Fortunately, it did. Luke, now 28, said some people have a false perception that a transplant patient “wakes up and takes a breath and suddenly it’s amazing”, adding:

Your lungs need to learn how to be in the new body.

“You’re pretty drugged when you wake up, so I felt fantastic,” he joked.  

“The nurses try to get you up and standing within 24 hours if you’re able. Initially I kept falling asleep at every single step.

Luckily I was physically strong because of the personal training but it was another 24 hours before the drugs wore off and I started to feel more like myself.

After undergoing surgery at the Mater Hospital he spent some time at the CF centre in St Vincent’s University Hospital.

At this stage his lung function was at 47% and kept increasing to its current level of above 80%. 

He was back in the gym about three months post-surgery and graduated from college in November. 

“The lungs had to catch up to my body,” Luke recalled. Over time he started to notice things many people take for granted, such as playing football and not being out of breath.

You get the Superman effect – you think you’re invincible, it just feels amazing that you can actually breathe, everything is a lot easier.

Respiratory health

CF was one of the conditions examined as part of a recent report by the Irish Thoracic Society. Respiratory Health of the Nation 2018 calls for a special taskforce to be set up to address the impact of respiratory diseases – such as CF, lung cancer and pneumonia – in Ireland.

Key statistics noted in the report include:

• Hospitalisation: respiratory disease now accounts for more hospitalisations than for cardiovascular and non-lung cancer cases combined; one in seven of all inpatient hospitalisations were for respiratory disease and the vast majority of respiratory hospitalisations (85%) were for emergency, unscheduled care in 2016
• Emergencies: respiratory diseases accounted for almost 20% of emergency inpatient hospitalisations in 2016; for cardiovascular disease the figure was 11% and for non-respiratory cancers it was 3%
• Disease types: the big three respiratory conditions causing disability and death are lung cancer, chronic obstructive pulmonary disease (COPD) and pneumonia
• Deaths: respiratory diseases cause almost one in five deaths in Ireland (18.8%); between 2007 and 2016, the period covered by the report, the number of deaths from respiratory disease increased by 14.6%, with 5,720 deaths in 2016; this compares with a 7.5% drop in cardiovascular deaths during the same period
• European Union: Ireland’s death rate from respiratory diseases is 38.2% higher than the EU-28 average

More information about CF, and supports available, can be read here, while more about Luke’s work can be read here. 

People can request an organ donor card by texting DONOR to 50050 (free) or via the IKA website.

A digital organ donor card is available from the Google Playstore or iTunes. People’s wishes can also be recorded when applying for a new driver’s licence by including the code 115.