Reasons for doing the ride:
Promote the benefits of organ donation, encouraging more people to sign the register and share their wishes. Also raising money for a good cause.
Cycling experience/miles per day:
Experienced. I regularly take part in sportives of 100 miles+.
The first moment I ever thought about transplant was when my doctor told me that I was approaching end-stage Cystic Fibrosis and would need a life-saving double lung transplant. It was not something I’d ever wanted to think about before. In my mind, thinking about it before I needed to would be akin to admitting defeat to the disease that I’d lived with all my life. I knew virtually nothing about the process of waiting for donors, surgery and recovery.
But, as my doctors explained, I was lucky that I was healthy enough to be considered, although this could change. I was on all of the treatments available but continued to decline. The only remaining option was transplant. After a 3-day assessment at the Freeman Hospital, I was informed that I was ‘actively listed’ for transplant.
For the 3 years that I was on the waiting list my life had been about my disease. Before I became unwell, CF was always present in my life in terms of treatment but it never stopped me leading a relatively normal life. I did everything that my peers did. I went to school, college & university. Went on family holidays and went on camping weekends with friends. I played team sports and rode bikes. But now I was constantly tethered via nasal cannula to something that dispenses or produces oxygen, and I was very aware of the effort needed just to take each single, arduous breath.
I knew that to be listed, I was classified as ‘end stage CF,’ but I never thought of myself that way until my lung function deteriorated to below 15%. This seemed to be a tipping point, as before this I’d been able to struggle-on, doing day-to-day activities. Over a very quick period of time, I went from using not that much oxygen to using lots. Then that wasn’t enough. My breathing became so laboured that I had to use a breathing-support machine that helps to push air in to inflate your lungs. I used this for 8 months and although I had some good days, the number of bad days as time went on grew in frequency and I continued to get worse. The night I was called in for my transplant I could barely walk 5 steps.
I’m well aware of just how lucky I’ve been to get these lungs. For the past five years since I received my transplant I’ve been able to live life. I value everything that’s been gifted to me, and every day I’m grateful to that one amazing person, that one family who did something extraordinary. It’s changed my life; it saved my life.