"He didn’t pull me from a burning building or stop me from stepping into the road without looking both ways. He saved me by carrying a donor card and making his family aware of his brave decision. I now have both of his lungs rising and falling in my chest. I still don’t know who this unsung hero is but what I do know is that without his bravery (all I know is that it was a ‘he’), my wife would now be a widow, my children without a father, my grandchildren without their ‘Poppy’ and I certainly wouldn’t be at my desk at work writing this with tears already welling up in my eyes at the thought of what might have been.

"In 2006, I noticed breathing problems and visited my GP. I was still playing sport and just thought I was slowing down as I was 42. The following year my family came down with the flu and so did I. Their coughs and sneezes went but mine remained. After a couple of courses of antibiotics and x-rays, my GP referred me to City Hospital, Birmingham. I had a horrible cough which was pretty much 24/7 and for 3 years practically no voice. So I was referred to a voice therapist and after six months of treatment taught myself to talk again. My breathlessness was getting worse and my lung function tests were in decline (in 2006 my lung function was 60% of a ‘normal’ person at my age and by 2012 it was down to 45%). After further research, I saw a cough specialist in Leicester and was referred to Dr Gisli Jenkins in Nottingham. He informed me that I had Pulmonary Fibrosis possibly caused by a Ro52 deficiency which was an auto-immune disease.

"I was 49. My career in Insurance Management was a distant memory. My salary was a third of what it was. I could no longer participate in sports. I couldn’t even pick up my grandchildren. In Gisli’s opinion I would need a lung transplant within 2-3 years or die. There was anecdotal evidence that chemotherapy ‘could’ slow the rate of progression (by now my lung function was down to 34%). and eventually this was arranged. Fast forward five years to August 2018 and I’m still holding on, barely, thanks to Gisli (now Prof Jenkins), careful management of my symptoms, planning each day carefully (with the kind support of my Birmingham City Council line managers) and using supplemental oxygen. My lung function was down to 21%. If it dropped lower the machines wouldn’t be able to register it. Gisli suggested that without a lung transplant I should enjoy Christmas as it was likely to be my last. I was given a double lung transplant in time.

"Now, I’m looking forward to many more Christmases in the future, and cherish every day; I make plans, participate in family life, I’m working to get fitter for the Transplant Games and took the whole family to Disneyland Paris in August. I’m also planning to learn to dance so that after I’ve walked my daughter down the aisle I can show her what a real dancer looks like. I hope to persuade as many people as possible to sign up to the organ donation register. IPF (Idiopathic Pulmonary Fibrosis) kills more people than leukaemia each year. We need more people to consider organ donation and talk about it with their families. I am helping raise awareness of IPF and effect change in the research and the lives affected by this disease. I will honour the sacrifice and bravery of my donor and their family by doing whatever I can to encourage organ donation."

This blog was posted on 2 September 2019