Last week I wandered down to London to be part of a Parliamentary reception for the CF Trust as part of their CF week celebrations/promotional push. I’m always happy to speak for the Trust because I believe 100% in what they’re doing and hope that, in some small way, my contribution helps to persuade others how valuable their work is.
The CF Trust published this lovely 5 minute video of the event on their website last week, so do take a look. The full text of my speech is below the video. I’d love it if you wanted to connect with me on Twitter or Google+ and let me know what you think.
Hello. I just have to say I love the layout of this event; because you’re all already standing it means I get an automatic standing ovation.
I’m here to give you a personal perspective on CF and transplantation. I was diagnosed with CF at 18 months of age and five and a half years ago, at 25, I received a life-saving double-lung transplant.
It’s far harder for me to convey the horrors of CF than if you were hearing from someone currently enduring them. I used to turn up to speeches dragging an oxygen cylinder and looking like death and tell people it’s rubbish and they would instantly agree. Now it takes a little more nuance.
So, I could stand here and tell you all about a life with CF. I could tell you about the endless rounds of physio, the mountains of medication, the time-sapping regimes of nebulisers and the moral-sapping stays in hospital every few months. I could talk to you about the fear that comes with waking up in the morning and not being able to take a proper breath in.
Or, I could talk about the difference transplant has made to my life – about being able to walk or run up a flight of stairs without stopping halfway for a five minute break to get my breath back. I could talk about how I’ve seen my the 30th birthday no one expected me to see or my wedding day almost a year ago to the day. Or I could talk to you about how it feels to be able to play football with my Godson, to chase my niece or to lift my nephew up for a cuddle.
These are all things I could tell you about, if I had the time.
Instead, let me put this to you: imagine, for a moment, you suffered from a disease where you knew that transplant was your last – and only – option. Imagine being forced to communicate with friends solely through the internet because you can’t be in the same room. Imagine the isolation and the fear and then imagine seeing your friends, slowly but surely, die from the very same thing that is destined to kill you.
That is the reality of a life on the transplant list; it’s a life on pause. That is the reality of day-to-day life with CF: no let-up, no respite, no days off. Just 24/7/365 fear, pain and often despair, mixed with hope, belief and often, a bit of a giggle – we’re known for our dark senses of humour.
Here’s the thing: this is something that we can do something about. If we can increase the number of potential donors in the UK, if we can increase the number of pairs of lungs made viable for transplant, if we better support the teams involved in performing the myriad complex duties of making a transplant happen, we can stop people with CF – my friends – from dying while they wait.
When I was listed for transplant, the stats said I had a 50/50 chance of actually receiving one. With a life-expectancy of less than two years, I lived for two and a half years filled with fear and hope. It’s fantastic to see that people with CF now face 70/30 odds, but they’re not much better than a coin toss.
The real reason I’m here today isn’t to talk about me and my life, but to talk about that 30%. That statistic that represents not just numbers on a list, but real people, real friends of mine and real family of many. That 30% represents people that we can – and we must – do better by. Because their lives are within our power – your power – to save. Thank you.
Some other posts you might like:
- Nope, we got nada!