There were cheers of joy when cystic fibrosis activist Orla Tinsley underwent a double lung transplant in New York last December.
Over the years, her work has been joined by others who also suffer from the disease and have spoken out to raise awareness about the condition.
Last year, around 580 people were waiting for a solid organ transplant (lung, kidney, heart, liver or pancreas) in Ireland, and of those, 308 underwent the operation.
Of the 36 bilateral lung transplants performed, 13 were in adult patients with CF.
Philip Watt, CEO of Cystic Fibrosis Ireland and chairman of the Irish Donor Network, said the transplant numbers for 2017 were very encouraging.
Bilateral lung transplants play an important role in the long-term interventions available to CF patients. Transplants are considered when lung function drops below 30% of normal.
“The biggest change that lung transplant patients tell us is that they no longer struggle to stay alive. Their quality of life improves dramatically,” Watt says.
“We have no other choice”
Lar Brennan, 33, who lives in Wexford and works as a personal trainer, had a relatively normal childhood with CF, but suffered a collapsed lung at the age of 15 and suffered painful relapses for years afterwards.
He was a high-risk transplant patient, and it took a while for him to get on the transplant list, until he was 28. “I was on the list for a total of 13 months. At that point, I was pretty much bedridden,” he said. He was in so much pain that he was receiving palliative care at home.
Brennan was scheduled for transplant in October 2013, but unfortunately, his lungs were not a match. He underwent a second operation and underwent the transplant at Matter Hospital on November 24, 2013. “I remember walking into the operating room and saying to my mum and dad, 'I have no choice, I have to do this.'”
Sarah Reidy, 31, from Carlow, was able to receive her transplant just over two months later, and had the operation in Newcastle on 27 May 2006. Transplants were still relatively new in Ireland at the time – the first transplant in the country had only taken place in 2005 – so there were still two lists, one for Ireland and one for the UK.
At the time, her lung function was only 12%.
“I tried to go to college in September before my transplant but had to postpone it due to multiple collapsed lungs. At that point I was on oxygen full time and peg-fed at night,” she said.
In February 2006 she was accepted onto the list and contacted for surgery in May that year. The operation went well and she was discharged within three weeks.
She is very grateful to the staff who looked after her during her stay in hospital.
Can I walk there?
Justin Reynolds, 52, from Dublin, underwent a double lung transplant on March 3 last year.
The CF patient recalled the day after his surgery: “I woke up and there was a physiotherapist and a nurse by my side. After a few minutes of talking, the physiotherapist said, 'I'm going to have you sit up and see how you feel and if you can sit up.'” Before the operation, he had worked hard on his physical fitness. Sitting down was the test of his efforts, and he passed with flying colors. “I felt like I'd won an Olympic gold medal,” he says. “I got up easily, sat down next to the bed, and asked them, 'Can I walk away?' I felt like I'd done more than enough, that my body was healthy, and that I just needed oxygen.”
For Reynolds, who is self-employed, the benefits of the operation are many, including feeling like himself again. He's no longer out of breath, but his mind is quicker instead. “Just before the transplant operation, all your organs shut down because of the lack of oxygen. Over time, it literally felt like my mental faculties were fully restored.”
Aftercare
For a year after her operation, Sarah Reidy continued to go to Newcastle for check-ups.
Since then, she has been under observation at Matter Hospital. “I have to undergo check-ups every three months. I also have complications from the anti-rejection drugs. I have diabetes and high blood pressure, but it's nothing compared to the life I had before.”
But CF is a lifelong disease that continues to affect her. “As I get older it's starting to affect my digestive system a little bit. Apart from that, CF can also cause liver disease, which I've been lucky enough to never have.” She is deeply grateful for the second chance at life she has been given. “I'm going to exercise a lot and be very mindful of my health. I'm more susceptible to infections so I need to be more careful in that regard.”
Brennan also has a packed exercise schedule throughout the week and says her athletic ability is impressive: “Most people with CF always have some issues, but what I've been able to do over the last four years, even being able to hop on a plane without worrying, is amazing.”
He thinks of Donnell every day. “That's what keeps me going, the fact that my family did that for me. In their grief, they saved my family from the pain they were going through.”
Twelve years on, May 27th is still an important date for Sarah Reidy. “My transplant has given me a chance at life that I never had – to graduate, travel, live and work abroad, work as a primary school teacher, get married – all things I only dreamed of before my transplant.” The organ donation process in Ireland is changing. “One of the key issues that we think could make a difference are the government's proposed changes to organ donor consent, which we think will make a massive difference in terms of generating organs for transplant,” says Watt.
“The new organ donation consent form assumes that people want to donate their organs, but there's still what's called a soft opt-out. The new system is a website where people can opt out.”
“It also means that next of kin can have the right of veto if they are unhappy with their loved one’s organ transplant.
“Ireland is one of the few countries in Europe that does not have such a consent regime and we call on Ministers to legislate and introduce it as soon as possible.”
Fact File
* Cystic fibrosis is the most common genetic disease in Ireland.
* Approximately 1,200 adults and children are affected.
CF affects the glands and causes damage to many organs, including the lungs, pancreas, digestive tract, and reproductive system.
* The first double lung transplant in an adult took place at the Matter Hospital in the Republic of Ireland in 2005. Prior to that, the procedure was only performed at the Freeman Hospital in Newcastle, UK. Since 2012, all double lung transplants in adults living in the Republic of Ireland have been performed at the Matter Hospital.
* Children with CF are rarely offered lung transplants, but those who need a transplant are referred to transplant centres in the UK.
