Stef Ashby's Story

"When my twin sister Michelle and I were first diagnosed at three months of age with Cystic Fibrosis, the average life expectancy for a child was early infancy. We were extremely susceptible to colds and flu, which for us was potentially fatal. 

"Frequent stays in hospital, sometimes for several months, were the norm. Michelle and I took comfort in the fact that we had each other and tried to give everything a go like normal kids, but we missed out on a lot of the simple pleasures like, going on school camp or playing in the rain.”

By the time Stef’s twin sister Michelle was in her mid 20s, her condition had seriously deteriorated and four years later she underwent a lifesaving double lung transplant. Miraculously, she recovered with no complications  By the age of 34, Stef’s own condition had worsened. Like her sister she required a double lung transplant in order to save her life.

“In 2001, just four months after I was put on the waiting list for a double lung transplant, I received the call I’d desperately been waiting for… they had found a compatible donor. The excitement I felt masked my fears at that moment. I could visualise being able to breathe with little effort. I thought about my escape from oxygen masks, shortness of breath, coughing, regular IV antibiotic treatments and chest physiotherapy. It felt like I'd just won a lottery. But, it was worth much more than that, it was my life.

"The operation went well and I felt healthy for the very first time. I was really looking forward to walking with ease and participating in sport once again. I swiftly became part of a swim squad and progressed to swimming in open water events and competing in triathlons –  a wonderful feeling. For someone who had experienced constant fatigue and a never-ending struggle to breathe, I felt exhilarated. I was living the dream I had always believed was mine.

"About six years after my operation, I suddenly experienced shortness of breath again. My world had crumbled. I had developed obliterative bronchiolitis, a condition that narrows the airways of the lungs and affects about 50 percent of transplant patients. Once again, I was lucky enough to be put back on the waiting list for another double lung transplant.

Fifteen months later I woke up after the second operation with a ventilator supporting me, IV drips everywhere, four chest tubes, a catheter and a central line. My first days were the hardest… stifling pain like a train that was running over my chest. I was just relieved it was over.

"It has now been only eight weeks since my operation and I am no longer fighting to breathe. It has been the greatest, yet most difficult time I have ever experienced, and I wouldn’t change it for the world. I don’t let a day go by without thanking my donor family, and the nursing staff and transplant team at The Prince Charles Hospital… their work has given me a second chance at life.

"For me, life has and always will be about the simple pleasures… watching a butterfly, being amongst nature and hearing the laughter of family and friends. My favourite saying is 'when was the last time you did something for the first time?' Material things are not important. They don’t make you happy.  Every day is magic, so make it count.”

Many people know that living with Cystic Fibrosis is not easy. It's an incurable, genetic disease, causing sufferers to develop thick mucus that clogs their lungs. Because of scarring from infection, a CF patient  will either slowly suffocate as their lungs are unable to supply enough oxygen to the body - or their immune system will lose the battle against infection.