Emma Harris - CF Patient
For me, living with Cystic Fibrosis (CF), the UK’s most common genetic disease, involves many challenges. Living with an intense regime of daily treatments, having an average life expectancy of 31 years and struggling to breathe when doing anything physical are some of them. But losing your closest friends at a young age from the same disease is one of the hardest. When Cystic Fibrosis reaches its end-stages, a person’s life can only be saved by double lung transplantation. But in the UK there are simply too few organ donors and as a result 50% of those on the waiting list for lungs will die before ever getting that chance.
We had lost 15 friends to Cystic Fibrosis so we set up the Live Life Then Give Life campaign
I set up the Live Life Then Give Life campaign with Emily Thackray in March 2006 after we had lost 15 friends between us with Cystic Fibrosis, whose wait for a double lung transplant had been in vain. When you watch your friends dying one by one because of the chronic shortage of donors, it’s not difficult to be motivated to take action to change the situation. And whilst the majority of the British public support organ donation, the simple fact is that very few of us have actually joined the donor register.
Often people may not realise just what a difference organ donation can make to someone’s’ life. My friend Rob is 33 years old and like me he was born with Cystic Fibrosis. Despite a lifetime of intense treatment and frequent hospital stays, by the age of 29 he was given the news that all of us with CF dread. Unless he received a double lung transplant within the next 18 months, Rob was going to die. He went on the active transplant list eight weeks later, knowing that with the severe shortage of organ donors in the UK there was only a 50% chance that the call would ever come.
By the Autumn of 2003 Rob was so ill he was spending most of his time in hospital. With a lung function at 10% of normal he was on oxygen 24 hours a day and needing to use a wheelchair to move anywhere. Hope was fading fast.
Then on the night of 29 October 2003 the phone call came that was to not only save his life but to transform it in the most incredible way. Despite their own grief and bereavement, somewhere another family had made the most generous decision possible…to donate their loved one’s organs. During an 11 hour operation, a team of two surgeons worked through the night to replace Rob’s own lungs with those of his donor and just five weeks later Rob left hospital with a whole new life in front of him.
Last summer, less than two years after his transplant, I watched as Rob completed the London Triathlon… involving a 750m swim in the River Thames, a 20km bike ride and a 5km run, all completed in under two-and-a-half-hours. Rob dedicated his achievement to the memory of his donor, without whom he would not even be here.
Rob is now training to be a teacher, works out in the gym three days a week and swims six days a week, competes in the UK and European Transplant Games each year and has found true love and is setting up home with his girlfriend, Melany. He has changed from a terminally ill person who was unable to live more than one day ahead to someone with health, fitness and a future. His life was given back to him by the kindness of strangers; a gift for which he remains eternally grateful.
LLGL has a simple message: think about it, talk about it, do something about organ donation.
But now I watch Emily’s fight for life and it is so difficult to see. I know only too well that unless Emily receives a double lung transplant within the next few months, I will lose one of the most treasured friends I have ever had. I watch her struggle to breathe, walk and do the simplest of tasks. I listen to her hopes for the future and her plans for her life. And I know that every day that the call doesn’t come her chances slip that little bit further away.
The Live Life Then Give Life campaign has a simple message. Let’s think about organ donation. Let’s talk about organ donation. Let’s do something about organ donation. It takes two minutes to sign on the NHS Organ Donor Register, an action which means each of us could one day save or radically improve the lives of up to nine people. I personally can’t think of anything else so simple that can do so much.
Emma Harris
Joint Manager – Live Life Then Give Life Campaign