When Nicholas O’Halloran got his first call for a double lung transplant, he didn’t know he’d entered a three-year waiting game.
It was summer 2011, his sister’s wedding was on the horizon for the autumn of that year and Nicholas was very ill with cystic fibrosis (CF).
“I thought I’d got it [transplant], that I’d be ready to go to my sister’s wedding that October,” says the 32-year-old from Farnanes, Co Cork, who was in his mid-20s at the time and on oxygen 24/7.
Sadly, the donor lungs weren’t a match and Nicholas went back on the waiting list. Between 2011 and 2014, he got the precious call for transplant 13 times.
“One summer, when I was in CUH, I was called three times in a week. I’d get a text: ‘you’re on call now’. I’d be texting back ‘are you sure?’ I felt: were they messing with me?
“In the hospital, I’d have blood tests. There’d be a six-hour wait for results to come back. Sometimes I went in at 8am and waited until 6pm to see if this time the transplant was possible. It’s a waiting game.”
Nicholas got so used to the cycle of high hopes plummeting to bitter disappointment that when the 13th call came he could barely motivate himself to get out of bed to get ready.
“My mother woke me at 7 or 8am, saying I’d just got a call. I was like ‘oh yeah? Go away’. After so many calls I didn’t feel bothered.”
He was so weak by now his sister had to help him wash. The ambulance arrived and he took the well-worn road to Dublin.
In hospital, he went through routine tests and x-rays, but he had a “funny feeling” and his instinct was right – it was 13th time lucky.
“They said ‘it’s a yes, it’s a match’. I didn’t react at all. I didn’t know what to say. All my family were jumping for joy and I didn’t know what to say.”
He was given 10 minutes to talk to his family.
“Just to say ‘see you later’. It’s a big operation, up to 12 hours, with big risks.”
He came to, trying to spit the oxygen tube out of his mouth.
Deaf since he was a baby (“I got blood transfusions four times and my ears were affected. I have no official diagnosis as to how I got deaf but it has nothing to do with CF”), Nicholas’s sign language was now a huge asset – weak from surgery, he couldn’t talk but he could sign to then-girlfriend Donna (now his wife) that he needed water.
Hospitalised for 15 days post-surgery, he measured his progress by the gradual decrease in the number of tubes going into his body and by his transitioning down from high-dependency ICU to normal hospital ward.
Nicholas is one of almost 1,400 people in Ireland living with CF, a genetic condition that negatively impacts multiple body functions including breathing, digestion and even reproduction.
A progressive disease, CF isn’t generally that severe when children are younger.
“In primary school, I didn’t know what CF meant. I got on with my normal life. I did everything the same as everyone else. I played football all the time in the yard,” says Nicholas, who was on a deaf-versus-hearing football team at school and who loved go-carting into his 20s.
“I got sick in my mid-20s. I started using IV antibiotics. It was the first time I realised how sick I was.”
He also had to give up carpentry, a trade in his blood and which he did “on and off” for 10 years.
But he “still loved houses” so he trained as a CAD (computer-aided design) technician, an area he’s been working in since last summer.
He also teaches Irish sign language in family homes.
“I like making the kids laugh – joking with them through sign language. I help them communicate better with their parents and family.”
Describing himself as being in two worlds – hearing and deaf – “but more in the deaf world”, he says barriers still exist for hearing-impaired people.
“I was attending a college course where no interpreters were provided – I had to drop out.” But Nicholas likes to focus on the positive. He’s enormously grateful to the donor.
“I’m sad for them but at the same time, I don’t know if it’s appropriate to say, I’m happy I got the lungs. And of course I want to thank them.”
Where can I buy a Purple Rose on 65 Roses Day? #65RosesDay is happening this Friday, April 12th! Please show your support for people living with CF in Ireland by purchasing a purple rose for €2 on 65 Roses Day, or else donate online at https://t.co/ot5nguBOI3. 💜 pic.twitter.com/0HJnQ9Xex5— CF Ireland (@cf_ireland) April 10, 2019
He includes in his thanks his family and friends (“without their support I don’t know if I’d be here”), the Air Ambulance and the medical community involved in his care.
Married to Donna since last summer, he loves movies (Game of Thrones and any of the Marvel films), driving, card games and travelling.
“I was best man at my friend’s wedding in Thailand a year after the transplant. We travelled around Thailand and Bali for three weeks.”
This month, he’s off on a three to four-week trip to Australia.
The philosophy that sustains him through life?
“Live every day like it’s your last. A sense of hope is important.”
Cystic Fibrosis Ireland’s 65 Roses Day is its flagship fundraising appeal day. It takes place on Friday, April 12.
If you’d like to volunteer on 65 Roses Day by selling purple roses in your community/workplace, phone Brendán on LoCall 1890 311211, email firstname.lastname@example.org or visit 65RosesDay.ie.
One in 19 people in Ireland carry the CF gene.
Thirty new CF cases are diagnosed annually in children here — Ireland has the highest rate of CF globally, and highest rate of families with more than one child with CF.
CF is caused by mutations in the CFTR gene. Dr Judith Coppinger at National Children’s Research Centre says mutations disrupt water and salt balance in cells: “Because of this dehydrated space, patients have build-up of mucus in the lungs.
"[Their] lungs can’t clear the bacteria, so they have a lot of bacterial infections. Over time there’s increased inflammation and increased bacterial infections.
"Eventually, some of these inflammatory cells release proteins [that] damage the lung architecture, the lung wall.”
Ten years ago, the average lifespan of someone with CF was 30 years.
Today, due to medical research/drugs, it’s nearer 40, depending on the individual.
Most people who die of CF die of respiratory failure/respiratory depression as there’s so much damage to the lung wall.
On 65 Roses Day — named for the way some children first say the words “cystic fibrosis” — on Friday, April 12, volunteers will sell purple roses countrywide.
Spar Stores are getting behind the appeal which aims to raise €120,000.
Money raised will go towards services such as patient grants for supports (counselling, fertility treatment, transplant assessment), the cost of a number of CF clinical staff in hospitals, and a new CF in-patient unit at Dublin’s Beaumont Hospital.
Schools and companies are asked to support 65 Roses Day by selling roses, organising a 65 Roses challenge (for example baking 65 cakes for a bake sale, or a 65km cycle), or participating in 6.5K Cystic Fibrosis Remembrance Walks countrywide.