Justin G’s Story:
Following a lifetime spent battling Cystic Fibrosis, 59-year-old Justin G. was critically ill when a double-lung transplant in March 2017 saved his life. Forever grateful to his donor, he’s focused on protecting their ‘gift’ and leading a full life.
“My family and I were aware of my Cystic Fibrosis from the very start of my life. I was diagnosed at just three months old in Crumlin hospital. Those early months were very tough, I believe. In fact, I was ‘confirmed’ a month before my first birthday as I wasn’t expected to see out the year.
“What that didn’t take into consideration was the dedication and determination of my parents, especially my Mom. She carried the gauntlet for the first sixteen or seventeen years of my life. She was amazing and her motto always was ‘you will live to see your pension.’
“She instilled that focus and determination in me. As I got older, I was intent on doing everything I could to ‘manage’ the illness and try control its impact on my life. It didn’t stop that nagging thought at the back of my head, however, that I might only be here for a short period of time.
“I skipped college and started working in my late teens because I was never certain how long I would have… and there were cars I wanted to buy! I built a career for myself, bought a house and indulged that passion for cars… I even got to fulfil owning some of my dream cars (Maserati, 6.9 S-Class, E32 BMW). Physically, I tried not to let the CF hold me back. I had 80% lung function in my twenties, gradually dropping to 40-45% lung function up to 2010,when I was forty-five, but it served me well.
“The possibility of a transplant really first started to materialise in 2010. I’d managed to get to my 50th year (2015) living by the guidance my Mom had given – respect the disease and my body, and know what’s right for me. However, despite trialling some new hi-tech CF drugs, my lung function was deteriorating. For the first time, I was really beginning to struggle, my lung function dropped to 25%.
“I was approved for the transplant list in 2015, and ended up being called twice. The first time in October 2016 was like a ‘dry run’ in my head. I was strangely calm about it. Those lungs were given to someone who they’d suit better on that occasion, but I was mentally ready.
“In the months after my first call, my lung function really began to deteriorate. It dropped to an estimated12% (doing lung function tests was causing too much damage, so hence the estimate). When people asked what did it feel like, I likened it to a hollow pipe that over time becomes more like an egg-timer. Your lung volume might stay the same but your ability to get the air in and out quickly diminishes… leading to chronic breathlessness.
“I met with Prof Jim Egan in January 2017. He looked at my numbers and asked me to keep doing what I was doing. I knew he was aware my body was failing and that I’d need a transplant soon. The last two months before transplant were particularly traumatic. And then in early March 2017, I got my second call.
“This time it was all systems go. The op. happened overnight on 3rd March and I remember waking in ICU (Intensive Care) the following day thinking ‘Well, I’m here anyway, but I don’t know how I feel’. The team were able to tell me things had gone well. I spent another three days in ICU, then on to HDU (High Dependency) for three days and was in hospital 18 days in all.
“The pre and post-transplant physio teams were great. I’m not the biggest fan of exercises but before transplant I worked very hard at weights, lunges, squats, the treadmill, whatever was needed I threw myself into it and it paid off even on the first day in ICU post-transplant!
“When I left hospital, I was still single at the time, and my wonderful Mom – with the help of family members and one particular friend Paul Little (RIP) – was still my primary carer. Twenty months after my transplant, my Mom, Rita (RIP) passed away. Having looked after my Dad when he was unwell and dealing with my failing health in the lead up to my transplant, I think she was running on her last reserves. When I got through the transplant, she was like the cat who got the cream. The lifetime investment she put into me had paid off as far as she was concerned. And then her own body began to fail, she had nothing left, I realised she’d been running on adrenalin for years.
“Life post-transplant has been full of many, many highs and few lows. I’ve had multiple short admissions for bacterial infections, then separately nerve damage, positional vertigo, the start of chronic kidney disease (CKD),etc. My expectations had risen post-transplant.. and the setbacks created a bit of a struggle with accepting being ill, something I had no issues with accepting pre transplant for the most part as it was a way of life!
“However, in Feb 2020 Susan came into my life. My Mom sent her I think. When it came to dating I thought I was glue factory material, but… we got married in Sept 2023 and she helps me re-embrace my attitude of gratitude ALL the time, not just 95% of the time. She constantly reminds me how grateful I need to be for the chance I’ve been given. It allowed me to reset myself, find a more focused way to deal with the setbacks. I hate to say it but sometimes it takes someone else to remind you…
“I can now say that life seven years post-transplant is great. I’m so genuinely grateful to the wonderful team at the Mater who continue to look after me and who brought me through my transplant. And, of course, the wonderful team at Vincents who cared for me throughout my battles with CF to get me to transplant. Most of all, however, I’m incredibly grateful to my donor and their family. Without their gift, in the most tragic of circumstances, I most likely wouldn’t be here. I feel it’s my duty to respect that gift and honour it by living life to its fullest.”
Justin G ‘Monteverdi’ Reynolds, Dublin
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