Life Stories

Jon’s Gift of Life

27 November 2016

Now, almost 20 years post-transplant, I’m one of the longest surviving CF post-op patients in the country. My health is back under control, I have one inhaled medicine to have twice a day (it takes around five minutes) and I can go to the gym and push myself; I’m as fit as I’ve ever been.

Pre-transplant, my life was all about my health; I was in hospital as often as I was at home.  Every day for four hours I had to do physiotherapy, I was tipped upside down on the bed and bashed to shift the pots of thick, sticky, green sputum that filled my lungs.  I was connected to a nebuliser for two hours a day and, when I was sick, attached to IVs for another three hours each day.  Actually, I had no life beyond taking care of myself and hoping someday I would get new lungs to breath; that was my all.

At the age of 23 I got my wish.  After four false alarms I finally got my new lungs.  It wasn’t an easy transition; I had many years when I was sick with infections – but even at those times I didn’t need physiotherapy, I only needed a couple of nebulisers a day, I rarely needed to be hospitalised and there was never a threat to my life.  My lung function was up from 50% pre-op to over 90%.  Frustrating as it was I was still better than I’d ever been pre-transplant.  Having been born with CF, always knowing that one day I would die from it, I finally had my chance to live.

Now, almost 20 years post-transplant, I’m one of the longest surviving CF post-op patients in the country.  My health is back under control, I have one inhaled medicine to have twice a day (it takes around five minutes) and I can go to the gym and push myself; I’m as fit as I’ve ever been.  Without that donation from a person – and his family – I would not be here and I would not have been able to travel, let alone travel around the world alone as I have done.

But transplantation is still in its infancy and, because of a lack of donors, many people will die before they ever get the chance to live their lives.  We need people to sign up to the register, to offer the one gift that every person CAN give: a chance.  Death is something no one should have to think about but, for many, their death is all they can think about.  So please, think about what happens to your organs when you no longer need them.  Do they get tossed away – or do they go to someone who desperately needs them?

The average survival age of a patient with Cystic Fibrosis is now in the 40s, but most CF patients will still need a lung transplant by the time they reach 25 – or they will die.  So please sign up; you could give them the chance to have a life.

We’d love to hear from you

We are very grateful to those who have sent us their stories and experiences relating to organ donation. If you have a story you would like to share on our blog, please email us on info@livelifegivelife.org.uk

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