George Compton has been told she could have just weeks to live after her body rejected a potentially lifesaving transplant .
The 28-year-old, of Cobham, Surrey, has battled cystic fibrosis all her life.
She was thrown a lifeline when she had a double lung transplant in August 2015.
But, tragically, in December 2018, George’s body started rejecting the organs and she contracted a series of infections.
Medics have told her she could have just weeks to live – and George has just one, final heartbreaking wish.
She is taking time out from planning her own funeral to beg people to sign up to become organ donors.
And despite now being treated in hospital George only wants to thank the donor who gave her the new lungs and their family for the extra time the extra time the transplant has given her.
Speaking from her hospital bed in Greater London’s Hillingdon Hospital she said: "Not long ago, doctors warned that I could have just weeks to live.
"Since then, it’s been very up and down, but I’m getting stronger, especially mentally.
“If the worst does happen, I have come to terms with it. I’ve nearly finished planning my funeral. I just have some letters to finish to family members and family to say goodbye.
“But I’ve had the most amazing life. I am so grateful for everything it has brought me, and everyone that has come in and out of it.
“I can honestly say I will die the happiest girl ever and look back and say, ‘Yeah you know what, I made the most of that.’
“If the worst does happen, I want my legacy to be that I lived, I loved, and I did it all with a smile on my face.”
George’s inspiring words come as campaigners are calling for a resolution to an ongoing price dispute with pharmaceutical company Vertex, manufacturer of CF drug Orkambi, which has shown in clinical trials to slow the decline of lung function, thus extending the life of patients.
Cystic fibrosis patients and their families have implored the government to step in and override Vertex’s patent, to allow other companies to create the drug cheaper.
Diagnosed with cystic fibrosis – a genetic condition causing the lungs to become clogged with sticky mucus making it difficult to breathe – when she was a baby, George is a member of Share Your Wishes, a group of transplant recipients, live donors and families of donors.
They are all fighting to ensure that people disclose their decision to be organ donors to their loved ones, to help facilitate more donations.
In and out of hospital for the majority of her childhood, George was placed on the transplant list at 21, when her right lung collapsed.
Briefly taking herself off when she began to respond brilliantly to the drug Kalydeco, she was listed once again in September 2014, by which time she required round-the-clock oxygen.
George says the lng transplant saved her life.
She explained: “My health, up until now, has been amazing.
"All I wanted to do was make my donor proud of me and to live life happily with good lungs.
“It’s the small things you take for granted, if you’ve never been able to do them and, after my transplant, I could go on walks with my friends, get a full-time job, climb the O2 and hike Orrest Head in the Lake District, which I did seven weeks post-transplant.
“Most importantly, I’ve been able to use my story to promote organ donation in a positive light.”
One of the highlights of her life was meeting her donor’s family after exchanging letters with them through a transplant co-ordinator to ensure she stuck to strict anonymity rules.
George said: “Meeting them was incredible and overwhelming at the same time.
“I’d have loved to have known my donor as a person, as I think we matched very well, but I want to say thank you for every second I’ve had with these lungs.
“I’ve not only been given more time with my family and friends, but good health to enjoy, which I never did growing up.”
Things changed dramatically for George in mid-December last year when she was struck down with a chest infection.
Hospitalised over Christmas, she was only allowed home for a lunch with her family on Boxing Day.
She was soon breathless and exhausted – signs of rejection which, according to the NHS, can occur when the body sees a new organ as a threat and produces antibodies against it.
At Harefield Hospital, George was pumped full of steroids and antibiotics, but was determined to be out of hospital by New Year’s Eve.
She said: “I planned to get myself home as I had, unfortunately, been in hospital on Christmas Day.
“On Boxing Day, I woke up not feeling 100 per cent, but had a shower, some painkillers and got all dressed up for lunch with my family.
“When I got to their house, I remember saying I was going to quickly pop upstairs, but walking just 20 steps left me struggling to breathe.
"My family noticed and even had to say to me, ‘George, get your breath,’ as I was still chatting away, and am so stubborn that I never know when to acknowledge when I need to stop.”
She was taken back to hospital after lunch and George’s condition deteriorated over the next few days.
Her temperature soared and antibiotics and painkillers stopped working.
George said: “I remember messaging my mum as she was at work saying something wasn’t right.”
She was put on oxygen and eventually moved to the high dependency unit as she continued to deteriorate.
George said: “Then, it felt like it all went really quickly. My temperature was raging and my oxygen levels were dropping. I was getting really unwell.”
Sadly, she didn’t make it home from hospital by New Year’s Eve as planned.
Instead, by January 4 doctors were warning her family that her lungs, by now irreparably scarred by a string of infections, and her body rejecting them, might need to prepare for the worst.
George said: “They said I had days. Even hours. I survived because I’m strong-willed, but I was in a dangerous situation.”
After that, George was transferred around various different wards as medics assessed the extent of the damage, while her helpless loved ones waited to see if she would pull through.
Remarkably, she did – but her future is still uncertain, although doctors are doing all they can.
Having made peace with the fact her time may run out, she hopes people will see her story as a positive one and that her words will now urge others to sign up as organ donors.
George said: “I can take any news, so long as people are honest with me. I’m not scared of dying, but of leaving my loved ones.
“I know things haven’t been great now, but I still want people to know that donating organs doesn’t just change the recipient’s life, it changes their family’s too.
"Even if it buys an extra six months, every moment is worth it.
“I’ve had three and a half years because somebody said yes to giving me that chance.
"I didn’t want to die then, at 25. I had so much more to live for and I got to experience a life of breathing freely, which I could only have dreamed of.
“If in doubt, ask yourself what you would do if you, or a loved one needed an organ.”
A great supporter of the Share Your Wishes openness initiative, George wants everyone to let their loved ones know their desire to donate organs when they die.
She added: “Have that conversation with your family. It’s not something people want to talk about, but making your wishes known makes that moment easier when the time comes.
“It also gives so much comfort for a person to know their loved one has lived on in someone else.”
For more information, visit www.shareyourwishes.co.uk .
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