On 6th April 2014, Amanda Chalmers crossed the finish line of the Brighton Marathon. A proud moment for any runner, but when you consider that just two years ago she was reliant on oxygen from a tank 24 hours a day and could barely make it up a flight of stairs unaided, her achievement enters the realms of the incredible.
Amanda was diagnosed with cystic fibrosis (CF) as a baby. People with this hereditary disease, which is caused by a faulty gene, produce a thick mucus that clogs up the respiratory and digestive systems, making it difficult to breathe or digest food. There’s no cure. ‘Living with CF means multiple hospital visits, lots of medication and daily physiotherapy to help clear the chest,’ says Amanda, who’s from Brighton. It sounds debilitating, but she is sanguine about her condition: ‘If you’ve never known any different, it’s just your life,’ she says. And thanks to that positive attitude, she’s been very busy – studying for a Materials Practice BA at the University of Brighton, travelling to Asia and playing sports, including hockey and tennis.
‘Until university, I was mostly well,’ she says. But in 2011 Amanda picked up a chest infection while travelling in Vietnam and ended up in hospital for weeks, hooked up to oxygen and a feeding tube. ‘It was when I first came out of hospital that I signed up to do the marathon, having seen some friends complete it – but I was too poorly,’ she says. In fact, far from embarking on marathon training, Amanda had to give up playing her beloved hockey as her health deteriorated and oxygen therapy again became a necessity.
Having grown up with CF, Amanda was always aware that a lung transplant was a possibility – but she says it was something she never thought would happen to her. ‘You have to reach a certain point of illness to be considered for a transplant,’ she says. By May 2012 she had reached that point and was put on the waiting list for a double lung transplant, an operation that would not merely change her life, but save it.
‘I’d had to go back into hospital because one of my lungs collapsed, so I was already there in September when the lungs became available and the operation was scheduled,’ she says. Was the prospect of undergoing such major surgery scary? ‘Not at all,’ says Amanda. ‘It was the one thing I wanted the most. I felt excited.’
The operation took a gruelling 12 hours – but it was a success. ‘I still have cystic fibrosis, but my new lungs are free of it,’ Amanda explains. ‘I’ll have to take immunosuppressant drugs for the rest of my life to prevent my body rejecting the lungs, and this can leave me susceptible to infections.’
Amanda lost a lot of strength and muscle mass during her illness, so the first step on the road to recovery was to enlist a personal trainer to help her rebuild her muscles through strength training. ‘My aim was to get back to playing hockey again,’ she admits.
But she had also set her sights set on a more pressing sporting challenge – competing in the British Transplant Games as part of the Harefield Hospital team, just 11 months after the operation.
‘It’s a fantastic event – people are classified by age, not by organ type – so you have people with new hearts, lungs, kidneys, corneas. You greet each other with, “Hi, I’m lungs!”’ Amanda took gold in archery, silver in tennis and bronze in the 3K run. Her success also gave her the confidence to attend to some unfinished business – the Brighton Marathon.
‘After the surgery, I knew I no longer had an excuse not to run the marathon,’ she laughs. It was also an opportunity to give something back to the Cystic Fibrosis Trust. ‘Thanks to the Trust putting money into care and gene therapy research, a major trial of new drugs is now underway,’ says Amanda.
Training began in January for Amanda and the six friends who took on the challenge with her. She started with walk-runs and built up her distance, peaking at 15 miles before a chest infection curtailed her training. But Amanda never had any doubt that she would make it to the start line – or the finish. ‘I’m too stubborn not to have made it!’ she says. She finished in 6:55, crowning her achievement with a sprint finish. ‘I felt a mixture of emotions,’ she says. ‘My friends and family were there. I was crying with elation – and pain.’
‘I feel very lucky,’ she says. ‘Many people with CF never get to have a second chance.There’s still such a shortage of organs being donated. If more people were made aware of the benefits donation can bring, I believe more would support it. I am only here due to the incredible generosity of my donor and their family, and am proof that organ donation changes lives.’