Woman with cystic fibrosis who had weeks to live before lungs transplant is now climbing mountains

A woman who felt she was being “suffocated” by her cystic fibrosis – and was told she had been just two weeks away from dying – has climbed Snowdon and run a half marathon after receiving two lungs from a transplant donor.

Georgie Cooper, 26, was diagnosed with cystic fibrosis (CF) – a genetic condition which causes sticky mucus to build up in the lungs and digestive system – when she was two. The complaints and compliance officer, who lives in Essex, took medication and used nebulisers – machines which allow you to breathe in medicine – every day. She managed to maintain a “steady” lung function between 70 and 80 per cent until her health started deteriorating in her late teenage years.

Cooper said 2018 was “the worst year” because she could not breathe properly and spent four months in and out of hospital as her lung function had dropped to 30 per cent and then to just 9 per cent. She was prescribed Orkambi, followed by Symkevi, to manage the condition. She was told she needed oxygen therapy 24 hours a day, which meant she had “tubes hanging out (her) nose”, and had to use a wheelchair. “It felt like constant suffocation, like I was being suffocated every minute, every second of every day.”

Just two weeks before Christmas 2018, when she was 20, Cooper was told she had “a maximum of two years to live” and should consider a double lung transplant. While she waited for a donor, Cooper was prescribed Kaftrio to treat her CF, which she believes kept her alive. Her mother, Lesley, who she described as her “rock”, became her full-time carer and, after three false alarms, Cooper finally received the call that “we’ve got a set of lungs for you”.

The surgery in June 2021, at Harefield Hospital in London, was successful – and came just in time. Cooper was told after the operation that her lungs had looked like “pulled pork” due to the CF damage, and she would have only lived for around two more weeks without the transplant. Before her surgery, Cooper had experienced three false alarms about suitable donors, and had started to believe that “to die would be peace”.

During this time, she planned her funeral and created a “dream” bucket list – including going abroad again – to look forward to should she survive. She said she tried to stay positive as she knew she only had “a short time left on this Earth”, but found it extremely difficult knowing she was dying. “I had actually written my goodbye letters to my mum, dad, brother, my nan and pa, in case it didn’t work out, or in case I died before my transplant,” she said.

She is incredibly grateful that the fourth call from the transplant service was a success. She describes her donor, who cannot be identified, as her “hero”.

In August 2022, and after recovering, Cooper climbed Snowdon – now also known as Yr Wyddf and the highest mountain in Wales. She also completed the Bath Half Marathon in October 2023. “Snowdon, at that point, was my greatest achievement,” she said. “I felt like that’s the closest I’m going to get to my donor for now, which was really emotional. Someone else has selflessly given something of theirs to save another life – it’s incredible. She is the greatest hero that I never knew.”

Cooper was born with no health complications, but soon developed a persistent cough, which raised alarm bells for her parents. After being referred to the Royal Brompton Hospital when she was two years old, she received her CF diagnosis and started taking medication and using nebulisers and having physiotherapy.

Cystic fibrosis is a genetic condition which causes sticky mucus to build up in the lungs and digestive system

(iStock)

While this was “normal” for Cooper, during secondary school she said she was “outed” as having CF during science lessons and her classmates and teachers discussed symptoms and life expectancy. According to the charity Cystic Fibrosis Trust, the median age of death of someone with CF in 2022 was 33. While Cooper was aware of the statistics, she said her peers at school would regularly say: “Oh you’re going to die soon, you haven’t got long left, have you?”

Cooper says she cannot believe what she has overcome and achieved since the surgery, having also secured her first job as well as her running and mountain-climbing exploits. She now plans to climb Ben Nevis in Scotland – the highest mountain in the UK. While she still has to take immunosuppressants and struggles with survivor’s guilt, Georgie says she feels she has been “reborn” and now “lives for two people every day”.

She was told her donor’s favourite quote was “your mountain is waiting”, which inspired her Snowdon adventure, and she wants to encourage others to “live every day like it’s your last”. She said: “Life is full of tablets, but I’m not having any physio, no nebulisers, and it’s like being reborn – it’s a life I’ve not known and I’m making up for lost time. I owe my life to my donor. She is my hero, she’s the greatest hero I never knew. It’s a gift of life, and that’s the best gift I’ll ever be given.”

For more information and support, visit Cystic Fibrosis Trust’s website at: cysticfibrosis.org.uk.

For more lung transplant information, visit: cysticfibrosis.org.uk/what-is-cystic-fibrosis/cystic-fibrosis-care/transplant-information-and-resources.