Here is a copy of the speech I gave this evening at the Evening Star Ipswich and Suffolk Press Ball, “The Champagne Ball, sponsored by Call Connection to raise money for the Disability Care Enterprise and the Cystic Fibrosis Trust.
“It occurred to me when I set about preparing this speech that I would actually have to do more work tonight than I’m used to, which I’m frankly quite miffed about. Six months ago, I had a life-saving double-lung transplant that has completely transformed my life. From staring into the abyss I’m now scaling mountains – almost – and my life as it was is nothing but a memory.
While all this is brilliant for me, it makes public speaking a whole lot harder. I may have the breath to describe things to you much more easily now, but before my op I hardly had to say anything beyond standing up and introducing myself. I’d walk into a room huffing and puffing, trailing my portable oxygen cylinders behind me and coughing my lungs out – there wasn’t a whole lot of need to describe how bad life with CF could be, I was living proof.
I’m now living proof of something else entirely – the miracle of organ donation – but as much as I like to harp on about the desperate need for organ donors in this country and urge people to sign the organ donor register on the UK Transplant website, it is still equally if not more important to me to continue to let people know just how horrific life with CF can be.
If you’re lucky these days, with an early diagnosis and a good medical team at a top hospital behind you, it’s possible for people with CF to reach their late teens and early twenties without a huge amount of trouble. But for every person who skips the harsh childhood years, there’s at least one more who doesn’t make it into adulthood.
Having your lungs slowly fill up with thick, sticky mucus to the point at which you have less that 20% of the lung function of a normal person isn’t any fun at all. Going through it as an adult was extremely hard and reaching the point at which my doctors considered me for transplant, giving me only two years to live, was impossibly hard to get my head around. Going through that as a child – as far too many CF sufferers do – is beyond my comprehension.
Before my transplant, when I was on 24-hour oxygen, a good friend of mine who’d had a transplant passed on to me a portable concentrator – a machine that supplies a limitless quantity of oxygen by generating its own from the air, rather than having to rely on bottled supplies which lasted a few hours at best. This was something of a lucky concentrator – a bit of a talisman – as it’s previous 2 owners had received their life-saving transplants. It proved to be so for me, too, when I received mine when I can’t have had more than weeks left to live.
After I’d recovered, I continued the chain and passed Claire (as the concentrator was Christened before it reached me) on to a good friend of mine called Sam. Like most things , though, luck runs out and just over a month ago, Sam lost her fight. Although a transplant would have given her – like me – perhaps a few more years, the medical advances that the CF Trust are working on constantly and some of which are being trialled as we speak would have prevented the need for that even to be considered and the effervescent, out-going, wonderful character that Sam was would still be with us.
The CF Trust needs 6 million pounds this year to keep its research moving forward and I’m here to ask you to help stop the loss of people like Sam and the 50 or so young people we lose to this malicious and destructive disease every year.
Thank you for coming and thank you for listening.”
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