Organ donation: Calls for wider post-transplant services

Paddy McNamara underwent a successful double lung transplant in England and has to return for post-transplant services

Transplant patients have called for wider post-operation services to be set up in Northern Ireland.

Patients who undergo surgery like lung transplants have to return to England in person for follow-up checks.

At the moment only kidney transplants are carried out in Northern Ireland.

The Department of Health has said transplant numbers in Northern Ireland are too small to provide pre and post-transplant services for every type of organ donation.

Latest departmental figures show that 161 people in Northern Ireland had organ transplants in 2021/22.

This is compared to 186 the previous year and 111 in the first three quarters of 2022/23.

'I was losing weight'

Paddy McNamara who is 59 and from Bangor in County Down had idiopathic pulmonary fibrosis (IPF) - a terminal condition in which the lungs become scarred and breathing becomes increasingly difficult.

Little is known about what causes it and there's no cure, but there are ways to slow it down, including - in rare cases - a lung transplant.

Last month, Mr McNamara underwent a successful double lung transplant to treat the disease.

He said he was given a week to live if he had not had the surgery.

As many as 300 people in NI are diagnosed with Idiopathic Pulmonary Fibrosis (IPF) every year

"The consultant here told me that if I hadn't have had the transplant my mortality would have been a week," he said.

"I was losing weight, I was on six litres of oxygen walking and on 2 litres of oxygen at rest."

Mr McNamara is now recovering at Freeman Hospital in Newcastle-upon-Tyne and hopes to return home within the next few weeks.

"I would count this as day one of a new lease of life and I am able to realise that you just can't take things for granted, he said.

"I'm looking forward to going home and being able to go out for a walk without having to take cylinders with me, without worrying about how long I can stay out for."

However, Mr McNamara said he will still have to fly back to Newcastle once a week for follow-up checks.

He wished he could have do some post-surgery treatment closer to home.

"It would be very advantageous if there was some form of collaboration whereby, they would have a clinic in Northern Ireland, even if it was done via Zoom," he said.

Dr Nazia Chaudhuri believes some post-transplant care could be carried out virtually

Dr Nazia Chaudhuri a respiratory consultant at Altnagelvin Hospital in Londonderry and a senior clinical lecturer at the University of Ulster, believes a post-transplant service in Northern Ireland is achievable.

"Certainly, I think it is feasible, and with joint partnership with the Newcastle transplant team we should be able to set up a post-transplant service where the patient stays in Northern Ireland," she said.

"Covid has taught us that we can deliver things virtually and I can see that developing, because the tests that patients need post-transplant we can do."

The Department of Health said while it was unable to provide post-transplant services for everyone, patients can be discharged back to an NI clinician when appropriate for any ongoing care.

Inside a holiday home at Puffin Lodge in Ballycastle

The first respite home on the island of Ireland for people with pulmonary fibrosis has recently opened in Ballycastle.

Pulmonary Fibrosis NI opened the Puffin Lodge last month so that patients and their families - who often cannot travel abroad because of the need for oxygen tanks - have somewhere close to home to holiday.

Gerry Fitzgerald was diagnosed with IPF in 2013 and was given three to five years to live.

A decade later he is on permanent oxygen therapy 16 hours a day and said his quality of life has diminished greatly, however he believes having this space will give him and his family somewhere to make memories.

Gerry Fitzgerald was diagnosed with IPF in 2013

"Because this is a progressive disease your carer is going to be suffering as much as you are, so a respite centre like this not only gives me a chance to have a change of scene and relax a little bit but it also gives my wife and my family a chance as well," he said.

"Foreign travel is no longer possible, and even travelling within the UK and Ireland, although it's possible, is difficult."

Gerry Fitzgerald with his wife Margo (second from left) and Tom McMillan from Pulmonary Fibrosis NI

"So, to have somewhere like Puffin Lodge right here on your doorstep is fantastic."

Pulmonary Fibrosis NI said it hoped to have a permanent respite home open in the next year and a half.

The chairman of its board of trustees, Tom McMillan, said: "What we need is something more permanent so we're able to provide better facilities and we will need some funding to help us do that, but that is our objective moving forward."

The Department of Health has also told BBC News NI that it is in the initial stages of developing a new respiratory care plan for 2023-2026 which will include pulmonary fibrosis.