A woman with cystic fibrosis (CF) who was advised to write a will aged 27 has defied expectations by climbing the UK's highest mountain. Charlotte Bones' health severely deteriorated during the pandemic and, when a vital operation was cancelled, she was advised by doctors to put her affairs in order.
But a new exercise regime and some "wonder drugs" helped Charlotte turn her life around. More than two years later she has ascended to the summit of Ben Nevis and is looking forward to celebrating her 30th birthday in April - a milestone doctors thought she was unlikely to ever reach.
She told the Mirror: “I’ve always known my time is likely to be limited but when I deteriorated two years ago, I just wasn’t ready to die yet. Doctors told me my only chance of survival was a double lung transplant, but the operation got called off and I felt terrified.
“It was awful. I felt very isolated and alone with my thoughts. But with the help of a new drug and lots of exercise, I have transformed my life.”
Charlotte is one of around 10,800 people in the UK who live with CF. She was diagnosed with the progressive disease - where the lungs and digestive system become clogged with thick, sticky mucus - when she was just eight months old.
Despite having to sit her GCSEs in hospital, Charlotte was well enough top hold down a full-time job in HR. But her health took a turn for the worse in April 2020 when she was rushed to hospital after vomiting blood and experiencing mobility issues down her right side.
A fortnight later, her mum found her unconscious and covered in blood again. She had suffered a major haemorrhage in her lungs, which were full of tiny holes due to CF, and also had a stroke.
“That was when I was told I needed a double lung transplant as quickly as possible,” Charlotte recalls. “I was alone in hospital because of Covid restrictions so had to call my mum to tell her.
“The doctors told me I should make a will and ensure my family knew my wishes, should anything happen to me. It was unthinkable to be 27 and dealing with that.”
Charlotte was dealt another cruel blow in July that year when, after receiving a call to say donor lungs had become available, pre-surgery tests found she had sticky blood syndrome and problem with her live. “It meant I probably would not survive a transplant so I was taken off the list,” she said.
“It had been my last hope but I realised that I wasn’t ready to die. It wasn’t my time.”
Doctors put Charlotte, whose weight had fallen to just 5st, on CF “wonder drug” Kaftrio and she was told to gain at least 3st. Her uncle also bought her an exercise bike to help build her strength – and by cycling in front of the telly at home, Charlotte incr-eased her lung function by 40%.
She also went back to work and started going to the gym five times a week. And in September, Charlotte was fit enough to climb Ben Nevis with by her brother, six cousins and best friend, raising £12,000 for the Cystic Fibrosis Trust.
“I’d always wanted to complete a charity event like that,” she said. “It took me eight hours as I am not very steady on my feet but I feel like nothing is unreachable now.”
The charity challenge was one of many things on Charlotte’s bucket list. She has also kayaked the Exeter Quays, run 5km for charity, and will be flying to Argentina in February.
Charlotte, of north-west London, said: “Thirty was the life expectancy for someone with CF when I was born, but my plan is to have a long and happy life. To be told to write a will at 27 shook me to the core, but I’m still here and enjoying my life – and I don’t take it for granted.”
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