Lung transplant man Jim Moore on why he's living proof of how vital it is to become an organ donor
'The op left me with a huge scar. I'm proud of it, it makes me grateful to be alive today'
A man who has undergone and survived a lung transplant has spoken of how his life has been completely transformed through the miracle of organ donation.
Jim Moore from Donaghadee was on the waiting list for the major operation after being diagnosed with devastating fibrosis of the lung.
After undergoing the transplant on October 20, 2013 — which was the only thing that could save him — Jim, a father-of-three and grandfather-of -four, has spoken about how things have been since he received the gift of life.
It has been an emotional journey, and included him dying on the operating table before doctors were able to resucitate him — he is now referred to by his medical team as “their miracle man”.
The 50-year-old, known to his friends and family as ‘China’, was diagnosed with the rare lung condition idiopathic pulmonary fibrosis, the same condition that killed his mother.
Speaking to the Belfast Telegraph to mark almost two years since his operation, he said that his transplant journey began when he started to feel unwell in January 2012.
“I thought I had a chest infection,” he said.
“I just phoned for an antibiotic, but I kept coughing. It never got any better and I got a stronger antibiotic.
“I was then referred to a specialist and I had a lung function test and an X-ray. I saw Dr Richard Hewitt in the Ulster Hospital to have tests and scans.”
His wife of 33 years, Amanda, said it had crossed her mind what her husband could be facing.
He had watched his own mother Ruth die from the same cruel disease at the age of 65. But it was something that hadn’t crossed Jim’s mind.
“I was told it wasn’t hereditary, or wasn’t supposed to be hereditary, so when Dr Hewitt took us in that day and I heard those words, well, it was a bit of a shock when he broke the news,” he said.
“He showed us the X-ray of the lungs with all the scars. I immediately knew what I faced and what the procedure was, as I had gone through it with my mum. She died two years, 10 months after being diagnosed. There is no fix, other than a lung transplant.”
Jim, who has worked for Pritchitt Foods in Ards for over 30 years, then had to undergo an intense week-long assessment in the Freeman Hospital in Newcastle-upon-Tyne to check if he was suitable to be placed on the transplant list.
“Every organ and blood is tested,” he said.
“There is a fine window, as you have to be ill enough to be put on the list, but well enough to survive the operation. So the moment I was told I was on the list, I felt I had won the pools.”
Amanda said: “It was such a high coming back — I remember we were on the plane and I ordered a wee bottle of Champagne on the flight and he had a cider.
“The stewardess asked if we were celebrating and I told her what was happening. The next thing is she came back and said that was complimentary on Flybe for the good news. It was a nice moment.”
But it was a short celebration, as the couple then faced a further rollercoaster of a journey waiting for the telephone to ring to say that an organ had been found.
“You practically live every day looking at your phone,” Amanda said.
“I gave them three mobile numbers and our landline, which could have rung any time.”
As they waited for the call, Jim’s condition deteriorated and by April he had to carry a portable oxygen machine permanently as he would run out of breath.
For the devoted former player and manager at Abbey Villa Football Club in Newtownards, it was a hard transition to make.
“It was affecting my whole life. Even walking to the kitchen or bathroom left me breathless; I loved cooking but I just couldn’t even lift anything
I had to stop playing golf completely, stop going to football. I had to stop doing shift work. I had been with them for 30 years, but they were very supportive.”
Doctors then prioritised Jim and put him at the top of the waiting list. During that time, the two suitcases sat packed at the top of the stairs ready for that lifesaving journey.
“Throughout the whole thing waiting for the transplant I was positive and confident. My father Alec had died at 65 very suddenly from an adult form of cot death. It had been a tough few years, so I felt I needed to stay as strong as possible. If it had not been for Amanda and my family and friends, I would not have got through this,” he explained.
Finally, in September, they received a call to say there might be a suitable donor.
“When we got the call the ambulance arrived at the house and we both started ringing people and leaving messages. We couldn’t believe it,” he said.
However, his hopes were initially dashed after the emergency drive to the airport.
Fog grounded the air ambulance that was waiting to fly him to the Freeman for his lung transplant.
Then fate further conspired against the Donaghadee man when the hospital rang to break the devastating news that the organ was deteriorating and surgery couldn’t go ahead after all.
“I look back at that now as a blessing, because if we had made that flight and gone to Newcastle, the lungs would not have been suitable anyway,” he said.
“The pilot came in and said: ‘I’m very sorry but I don’t think we can fly tonight’.
“Coincidentally, we were lucky we weren’t in the air because we found out the lungs had deteriorated and could not have been used. But it was such a kick in the guts.”
Within four weeks the phone rang for the second time.
“It was October 20 and we were at a charity do at the Meadowbank Social Club, which has done so many fundraisers for me.
“We got back at about 12.30am and we got home and had two missed calls. I checked and the message from the transplant co-ordinator said: ‘Hello Jim, don’t panic, but we may have a suitable donor for you, can you please contact us?’
“The ambulance was at the house within 20 minutes. We left about 1.15am and headed to the airport. We were both just excited and a lot more prepared than the last time. The lungs were put on a specialist machine that would help improve their condition.
“The best thing I’ve ever heard was at 1pm on the Sunday: ‘I’ve got two beautiful pink pumping lungs for you — get ready to go’.
“At 1.50pm we said our goodbyes at the operating theatre and it was emotional.”
The operation was due to last between six to eight hours, but after 10 hours Amanda (48) hadn’t heard any news.
At midnight the transplant co-ordinator called with the dreaded words that things weren’t good.
“He had struggled through surgery. I was there on my own and was just a mess,” said Amanda.
“This was always my nightmare and it was what you relived in your head before the operation.
“What would you tell the kids? Then, when I got my phone call, ‘this is my nightmare coming true.’”
During the operation Jim’s heart stopped and he died for a time, but the medics were able to bring him back to life.
“Today, the doctors still call him their walking miracle,” Amanda added.
Once out of surgery Jim was sedated in the high dependency unit of intensive care for over two weeks. “I remember waking up and Amanda’s voice saying: ‘You’ve had your operation’.”
But when Jim came out of sedation the only parts of his body that could move were his eyelids, so he could only blink.
He had to have a tracheotomy — which left him unable to speak — and spent weeks in the hospital slowly recovering.
“I became very frustrated because things were so slow. I wanted to go home and be near my grandchildren,” he said.
“The people in Newcastle encouraged me to get better. Their positivity ran off me, the nurses and doctors were just brilliant. And being able to finally talk without getting breathless is amazing.”
Jim was in Newcastle for 71 days, including Christmas Day.
“The highlight was being given a big bottle of Magners to drink — it was gorgeous!” he joked.
Amanda remained by his side for 14 weeks before they got the news that he was finally well enough to be transferred back to the Ulster Hospital on January 9, 2014. Just 20 days later he was allowed to go home to his three children David (31), Cheryl (29) and Colin (21) and four grandchildren Jayden (7) Logan (2), Oscar (3) and Zach (1).
“It was some journey,” he said.
“I will never forget any of it.
“I can breathe now, I can breathe.
“I can watch my son play football on my own without an oxygen machine. Watching the family grow. Had I not have had the transplant, I would not have met Zach, my grandson.
“It makes you grateful for life. The number of people who have signed up to be a donor in Donaghadee in support is just fantastic.
“And we can never thank the donor family enough. We have written and sent a letter to the family a year ago. We would love to hear from them, but we understand it could be difficult, but we are all so, so grateful.
“It is almost my two year anniversary since I had my operation.
“It left me with a huge scar across my chest. It is something that I am proud of. It makes me grateful for life.”
Every year, around 15 people die waiting for an organ donation in Northern Ireland.
Amanda said she would just reach out and encourage everyone to sign the donor register.
“I just say to people, your organs are no good to you in Heaven, but on Earth they can make a big difference.
“At one point I had been preparing to be a widow before I reached 50 — now we take every day at a time and love every day.”
To become a donor, visit www.organdonationni.info