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'Always be breathing: One man's journey back from the brink'

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Paul Ashberry, who has recently got involved with our respiratory patient panels, was diagnosed with cystic fibrosis as a baby and underwent a double lung transplant. Determined to stay positive in the face of adversity, Paul put pen to paper about his experiences in his book, ‘Always be breathing: One man’s journey back from the brink’. He kindly agreed to share an extract as part of the ‘Breathtaking Lungs’ project to raise awareness of breathing conditions and the need for research.

A man sitting on a chair smiling with his arms folded. - Public Programmes Team

My name is Paul Ashberry. I was diagnosed with cystic fibrosis as a baby; I’m now 45. I managed to keep the real dangers at bay until my mid-thirties. But when cystic fibrosis made its presence felt, it became an unstoppable force and I was the easily movable object. I was put on the transplant list and had a terrifying three year wait to get the life-saving operation before time ran out. That was over six years ago. I wrote this book as a way of capturing some of the experiences I had.

Extract from 'Always Be Breathing':

There were a number of difficult experiences during the period leading up to being listed for transplant, times when I was struggling but wouldn’t allow myself to show it or slow-down in any way. Some of the hardest were walking with others, trying to keep pace. Unable to stop for the rest needed, concentrating on breathing to get through the next step, a destination in the distance never coming closer, always hoping no questions, please not any questions - walking and talking at the same time was impossible.  

I passed these walks counting steps or guessing the number of lampposts before we’d get to where we needed to be. I developed ruses to stop for a few seconds, an untied shoelace or a sudden need to use the toilet in a pub we might pass. I look back on it now and I wonder why I put myself through it to such an extent. Maybe, even at this stage, some part of me thought I’d be able to turn it around, and once it was out of the bag it couldn’t be put back in.

From the point I was listed for a transplant, not only did close friends need telling but casual acquaintances also learnt of my situation. A phone call might come at any moment and whatever I was doing at that time would have to be dropped for this life changing journey to the hospital, one I couldn’t guarantee I’d return from. Carrying on in silence was no longer an option.

Paul's amazing story is available to puchase for your Kindle here.

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