At just 18 months of age I was diagnosed with Cystic Fibrosis, the UK’s most common life-threatening genetic disease. Growing up I stayed relatively well and active until I hit my teens and early twenties then my health changed for the worse. In early 2004 I flew to Texas for two weeks but when I arrived I suffered a partial collapse of the lung and wasn’t allowed to fly home. I ended up spending three months in Texas before I could get home and it triggered a steep downward spiral towards last resorts. I was listed for a double-lung transplant in June 2005 and my health slowly declined as I endured no less than four false alarms for transplant. Each time being called to the hospital and prepped for surgery only to be told that the donor lungs weren’t good enough to be transplanted. In November 2007, mere weeks from death, I received the gift I’d been waiting for, and in the course of seven hours on an operating table, my life was turned around. Since then I’ve gone from strength to strength. In the lead up to my transplant, I kept a blog which was published on Kindle and in paperback at the end of 2013 to coincide with my 5th transplant anniversary. Smile Through It: A Year on the Transplant List is my honest and open account of trying to stay positive and hopeful when all the odds are stacked against you.
I am dedicated to sharing the message of organ donation having seen far too many friends – easily in double figures – die while they waited for a transplant that never came. Life is too precious to let slip away when we know there is something we can do about it. As a public speaker I have the privilege of informing and inspiring audiences from medical conferences to parents and carers, from knights of the realm to royalty. As a filmmaker I’ve worked with the BBC and numerous charities to help them spread the message of organ donation. And as a social media specialist I have delighted in spreading my story and helping others talk about theirs as far and wide as we can, as well as offer whatever advice or support I can to people going through the same things. I continue to be an ambassador for the CF Trust and am currently working closely with DEVELOP, a key project in trying to make more lungs viable for transplant, as the patient representative on their advisory board.
Oli Lewington is a writer, film maker and social media specialist based in Milton Keynes