- Written by Rory O'Reilly
- BBC News NI Health Correspondent
Transplant patients are calling for a wider range of post-operative services to be established in Northern Ireland.
Patients undergoing surgeries such as lung transplants must return directly to the UK for follow-up.
At present, only kidney transplants are carried out in Northern Ireland.
The Department of Health said the number of transplants in Northern Ireland was too low to provide pre- and post-transplant services for all types of organ donation.
The latest departmental figures show 161 people received an organ transplant in Northern Ireland in 2021/22.
This compares to 186 a year ago and 111 in the first three quarters of 2022/23.
“I was losing weight.”
Little is known about its causes and there is no cure, but there are ways to slow its progression, such as a lung transplant in rare cases.
McNamara underwent a successful double lung transplant last month to treat the disease.
He was told that he had one week to live unless he underwent surgery.
“The consultant here said if I hadn't had the transplant, I would have only had a week to live,” he said.
“He had lost weight and was taking in 6 liters of oxygen when walking and 2 liters at rest.”
Mr McNamara is currently recuperating at the Freeman Hospital in Newcastle upon Tyne and hopes to return home within the next few weeks.
“I count this as the first day of a new life, but it helped me realize that I can't take things for granted,” he said.
“I’m looking forward to being able to go home and go for a walk without having to carry around a cylinder or worrying about how long I’ll be out.”
However, Mr McNamara said he would still need to return to Newcastle once a week for follow-up.
He wished he could have had his post-surgery treatment closer to home.
“It would be very advantageous to have some form of collaboration that would allow us to open a clinic in Northern Ireland, even if it was done via Zoom,” he said.
Dr Nazia Chaudhry, respiratory consultant at Londonderry's Altnagelvin Hospital and senior clinical lecturer at the University of Ulster, believes post-transplant services in Northern Ireland are possible.
“Certainly I think it is achievable. A joint partnership with the transplant team in Newcastle should allow us to establish a post-transplant service where patients stay in Northern Ireland,” she said.
“COVID-19 has taught us that we can deliver things virtually. We can see that developing as we can do the testing that patients need post-transplant. I can see it.”
The Department of Health said it cannot provide post-transplant services to everyone, but patients can be discharged back to NI clinicians if they require continued care.
The island of Ireland's first retreat for pulmonary fibrosis patients has recently opened in Ballycastle.
Last month, Pulmonary Fibrosis NI opened Puffin Lodge as a holiday destination close to home for patients and their families who are unable to travel abroad because they require oxygen cylinders.
Jerry Fitzgerald was diagnosed with IPF in 2013 and was given three to five years to live.
Ten years later, he is on permanent oxygen therapy 16 hours a day and said his quality of life has significantly decreased, but the space will give him and his family a place to make memories. I believe that.
“This is a progressive disease so your carers are going to suffer just as much as you. So a respite center like this just gives me a chance to change and relax a bit.” “It's an opportunity for my wife and my family,” he said.
“Travelling abroad is no longer possible, and even if possible, traveling within the UK and Ireland is difficult.”
“So it’s great to have a place like Puffin Lodge on our doorstep.”
Pulmonary Fibrosis NI said it hopes to open a permanent retreat within the next 18 months.
Board chairman Tom McMillan said: “What we need is something more permanent so we can provide better facilities and we need some funding to support that, but that's not something we need. “This is our future goal.” ”
The Department of Health also told BBC News NI it is in the early stages of developing a new respiratory care plan for 2023 to 2026, which includes pulmonary fibrosis.