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 and managed to maintain a “steady” lung function between 70% and 80% for many years until her health started deteriorating in her late teenage years.
Georgie 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% and then to just 9%.
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“I was on 24-hour oxygen and in a wheelchair. It felt like constant suffocation, like I was being suffocated every minute, every second of every day,” Georgie told PA Real Life.
Just two weeks before Christmas 2018, when she was 20, Georgie was told she had “a maximum of two years to live” and should consider a double lung transplant.
Her mother, Lesley, who she described as her “rock”, became her full-time carer and, after three false alarms, Georgie finally received the call that “we’ve got a set of lungs for you”.
The surgery at Harefield Hospital in Greater London, in June 2021, was successful and came just in time as Georgie 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.
After three false alarms that a suitable donor had been found, Georgie said she thought “to die would be peace”, but she is incredibly grateful that the fourth call from the transplant service was a success, and describes her donor, who cannot be identified, as her “hero”.
After recovering, she climbed Snowdon – now also known as Yr Wyddf and the highest mountain in Wales – in August 2022. She completed the Bath Half Marathon in October 2023.
“After my transplant, I climbed Snowdon which, at that point, was my greatest achievement,” Georgie 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.”
Georgie 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.
While this was “normal” for Georgie, 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 Georgie 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?”
Georgie had managed to maintain a healthy lung function until the end of 2018 when it was measured at 9% and 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.
“I couldn’t walk… I couldn’t cook, I couldn’t even grate cheese because I was far too out of breath,” she said.
Just two weeks before Christmas in 2018, doctors gave Georgie two years to live and told her to consider a double lung transplant.
“I knew I was in desperate need for something – if not, I was going to die,” she said.
“Having a lung function of 9%, being on oxygen and in a wheelchair, you know this isn’t going to carry on for much longer, but I just went numb; I didn’t know what to say.”
Georgie went on the waiting list in early 2019 but did not get any calls about a potential organ match.
During this time, she planned her funeral and created a “dream” bucket list – including going abroad again – to look forward to should she survive.
Georgie 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.
Georgie was then prescribed Kaftrio to treat her CF, which she believes kept her alive while she waited.
After three false alarms in 2020, during which she contracted Covid-19, Georgie finally received a call in June 2021 to say the transplant was going ahead.
She said she was “on the brink” of dying and still fearful the transplant might be cancelled until she was taken down to theatre at Harefield Hospital for what would be nine hours of surgery.
She spent two days in intensive care, and then a week into her recovery on another ward she was told how “desperate” her situation had been.
“One of my transplant co-ordinators said, ‘when you were going down, they said you only had a matter of two weeks left, maximum’,” Georgie said.
“When they took (my lungs) out, they just fell apart – they were huge, stretched to capacity, falling apart, bulbus bits on them. They described them as pulled pork.”
After the drains were removed from her new lungs, Georgie was discharged to continue her recovery at home – and she could not believe the transformation in her breathing.
She said it felt like she could “breathe down to her toes”, like her oxygen was “unlimited”.
Georgie 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.
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