A Matter of Life and Breath
When she was 11, Emily Hoyle asked doctors how long she had to live. They told her she’d be dead before she was 40.
Emily, 28, was born with Cystic Fibrosis (CF), a genetic disease that causes thick, sticky mucous to build up in the lungs, affecting breathing and digestion. Though she’d grown up with the disease – she was diagnosed at just four months old – it was a shock.
“My brother, who also has CF, was told he couldn’t have children,” said Emily. “While the doctors said I could have kids, they told me that I could only expect to live into my 30s.
“I didn’t want to tell my parents, and couldn’t really talk to friends about it. So I decided then that life just had to go on and I had to do everything possible to maximise my chances.”
Brave Emily, from Cambridge in the UK, went to university to study physics, and despite being in and out of hospital, she started a career in banking. She even met her 34-year-old husband John – something she feared would never happen because of the scars on her arms caused by the treatment, as well as the fact that the steroids she took made her body puff up. They got together at a friend’s 21st birthday party.
The pair married in Cambridge, just after Emily came out of hospital where she’d been battling a bad bout of her illness. She was so poorly, she said: “I didn’t know whether to plan my wedding or my funeral.” But she pulled through and Emily and John started a new life in Abu Dhabi in 2007.
Emily worked for Standard Chartered Bank as a relationship manager for private wealth in the city, and even taught Pilates in her spare time. She thrived in the sunny climate and only told close friends about her illness. She said: “The hot weather was good for me. I was able to do everything. On the outside I looked completely normal. I had two to three physio sessions a day and I was on about nine nebulisers a day. I would nip home from work at lunch time and do it, and I had one in my handbag. I didn’t want to be treated differently. I didn’t want people asking how I was all the time – I wanted to be in a world where it didn’t exist.”
But Emily’s health went downhill after getting a fungal disease in her lungs, and she started coughing up blood. The couple made the decision to return to the UK in 2010 so she could have specialist treatment.
By the following year Emily was fighting for her life in London’s Royal Brompton Hospital, unable to get out of bed. Doctors told her family she didn’t have long left. She said: “I was told I could go any day. My husband was called at three in the morning and was told to say goodbye to me. But I managed to survive.”
Though Emily pulled through, she was told that if she didn’t have a lung transplant she would die within weeks. But fewer than half of the people who need donor organs actually get them. While she was in hospital Emily watched as other patients on the ward died from the same disease, including a girl of just 19.
After just six weeks of being on the waiting list, Emily got the call her and her family had been waiting for. There was a pair of lungs for her at Harefield Hospital transplant hub. Emily said: “A week after my birthday, the nurse walked into my room with a smile on her face and I knew what was coming. There are a lot of people who don’t get transplants. There were four of us applying at the same time and I was the only one who made it – all the others died.
“I paid my credit card bills as I knew that if anything went wrong I didn’t want my husband to have to deal with any debts. I declared on Facebook that I was off to Harefield. I know it sounds strange, but among all the emotions, I was also feeling excitement and relief. But I was getting worse. There were more crackles in my lungs and the doctors had said that there was nothing more they could do.”
The risky surgery went ahead on 2 August 2012. Emily was given the lungs of an 18 year-old boy, and though the transplant won’t cure her, it has given her precious more years and transformed her life.
She said: “The average life expectancy worldwide following transplants is only five years, though people do live longer. But if I hadn’t have had the transplant I would have had just weeks left to live.
“The best thing is the mornings. I now spring out of bed and have energy straight away, instead of not being able to move. I can walk my dog, watch my little brother play rugby and do things I haven’t in ages. I feel like I’ve won the lottery.”
Now Emily’s old friends in Abu Dhabi have arranged The White Party to raise money for charity, the Cystic Fibrosis Trust. Though she misses Abu Dhabi, Emily’s ongoing recovery means she has to remain in London and cannot attend the event or indeed return to live in the Middle East. She said: “I miss the lifestyle. I’d definitely rather be living there but I don’t think it’s a possibility.”
Organiser Lizzie Johnstone said: “Emily handles her condition with such grace and humility that it makes the situation all the more tragic. A group of us came up with the idea to host The White Party to raise awareness and funds for those affected by CF. We’ve had an overwhelming response and can’t wait for the night itself.”
• Cystic Fibrosis is a genetic disease.
• It affects 100,000 people worldwide.
• It causes the internal organs to become clogged with thick, sticky mucous making it hard to breathe and digest food.
• Treatment includes physiotherapy and drugs, but there is no cure.
• Only half of sufferers are likely to live past 41.
INFO: The White Party is an invitation-only event at the Monte Carlo Beach Club, Abu Dhabi on Friday 26 April, preceded by a golf tournament at Yas Links Golf Club. To help, visit www.thewhitepartyabudhabi.com or email: firstname.lastname@example.org