“Transplant is an incredible and precious gift” – Rosie’s story

Life pre-transplant

I was diagnosed with CF in 1987 when I was six months old. Growing up in Dublin, I enjoyed a relatively healthy childhood, but once the teenage years arrived, my health took a nosedive. By the time I was 17, I was experiencing frequent chest infections, each one more intense than the last. I was only managing a few weeks without IVs before another wave of infection would arrive and knock me over. My lung function was slowly getting worse, and I couldn’t study or work. I struggled to keep up with friends and my daily routine revolved around physiotherapy, nebulisers, and doses of antibiotics. More and more of my life was sapped away, lying in hospital. 

In 2005, I was referred to the team in Newcastle for a lung transplant assessment. Over the course of four days, I had a lot of tests, where every inch of me was inspected. The team described to me what a transplant would involve and made it clear that there were no certainties: I needed to understand that a transplant would be exchanging one set of medical problems for another, but hopefully I would be able to breathe and enjoy a better quality of life if I received one. They explained that although lung transplants had come a long way since the first undertaken in the 1980s, in 2005, just over half of patients would still be alive five years after their transplant. Still, I held on to the hope that if I was ever lucky enough to receive a transplant, those figures would keep improving as the years went by. 

In November 2005, I was placed on the waiting list, and I crossed my fingers that I would receive a call. I had lost many friends whose calls sadly never came, so I knew that nothing was guaranteed. On 1 July 2006, after one “false call”, I received a phone call to let me know that a set of lungs had become available. A family somewhere, likely going through one of the darkest and most difficult times of their own life, had decided in that moment to donate their loved one’s organs, a profoundly selfless decision. I was flown over to Newcastle that night and received a transplant the next morning. 

There were ups and downs in the days following the surgery, difficult moments (experiencing acute rejection which, I was told, was to be expected) and surreal moments (being told I was going to sleep without supplementary oxygen for the first time in years), but overall, I was incredibly lucky that my recovery progressed well. After two and a half weeks, with my lung function improving, and my feeding tube no longer in use, I was told I was well enough to go home. 

Life after transplant

In the years that followed, I was fortunate enough to attend university and travel around the world. In 2011, I moved to Manchester and started working full-time in digital product design. Holding down a full-time job was something I could only have dreamt of a few years before. As I moved from my twenties into my thirties, my health held its own and life brought many special moments too: getting married, becoming an Aunty, and watching my friends start families of their own. 

Using my experiences

Two years ago, I joined Cystic Fibrosis Trust’s Involvement group. I wanted to try and apply skills and experience I had gained from my work and give back to the CF community in a meaningful way. In 2024 the group shared an advertisement from NHS England who were looking for public and patient voices (PPVs) to join their Cardiothoracic Transplant Transformation programme. 

They were looking for someone who could represent the experience of what it was like living with a lung transplant. It’s important to show that we are more than just figures on a spreadsheet, and more times than not, our lung transplant is just one part of a complex system of health challenges we need to manage – hello, diabetes, anaemia, and occasional bowel blockages! I was successful and started to offer a patient perspective to the problems the programme was trying to tackle. 

Fighting for change

A few heart and lung transplant patient advocates and I recently wrote to the Health Secretary, Wes Streeting MP, requesting a review to the transplant system. 

Although the UK was once at the forefront of innovation, sadly over the decades, our rates of transplant and our outcomes now lag behind comparable countries. People who have had a transplant here experience poorer survival rates and quality of life than those in other developed countries. 

Over 20 years on from my own transplant assessment, shockingly the five-year survival rates are unchanged. People undergoing a lung transplant assessment today will be given the same facts I did over two decades ago. This isn’t the fault of the doctors and nurses, who are trying their best to support their patients within a system that doesn’t adequately support them. Not enough funding into heart and lung transplant and a lack of joined-up care means that things are only getting worse. 

We shared this letter with the transplant community and within just a few days, had over 1,000 people sign up to support our ask. We now have over 2300 signatures.

Transplant is an incredible and precious gift. It has given me time, health, opportunities to make memories, and moments I once thought I would never have. But it has also made me realise the inequalities that exist within the transplant system. I am in a position where I can use my voice to speak out, and I hope that the amount of support our open letter has received shows how important these issues are to our community. I grew up knowing transplant would likely be in my future. For many with CF, this prospect remains, and on behalf of all of us I ask that you support our calls for the Government to act. 

I will always be grateful for the gift I’ve received, but I also hope that I can help shape a better future for the next generation of people with CF.  

To view the petition and add your name, click here

To find out more about transplants and read our resources, visit our Transplants page here.