Felix, my sprightly nine year old son, has started playing field hockey. He’s been attending Sunday coaching at a local Surrey hockey club with his best friend Jude. Last Sunday, he played in his first Under 10 tournament against other clubs and got heavily involved both in defence and attack, pulling off many tackles and scoring a few goals to boot! That same day was the birthday of his deceased Grandpa (my dad who loved his hockey) and I hope he would have had a grandstand view of his grandson keeping the Wotton hockey tradition going!
I feel the utmost pride watching Felix play and clearly enjoying the sport which I hold so dearly to my own health survival and life passage. I’m motivated to sustain my health and fitness so that I can join him on the pitch.
These last few months have seen me recover from a hernia operation which was likely caused by so many years of coughing – the most common side-effect of CF. It was a day surgery at St George’s Hospital in London, where my wife Katie works as a pre-op assessment nurse specialist. Katie dropped me off at the day surgery, saw her patients and then picked me up once I could walk again following my operation. The irony of the procedure was that the hernia didn’t hurt before the operation, but boy was it sore for a long time afterwards… especially when I coughed!
Katie was a wonderful nurse to me in the hours, days and weeks post operation as I went from walking like Bambi to gently walking to going back to the gym for moderate exercise. Playing hockey is still some way off but I’m getting there slowly but surely.
A new drug, Orkambi by Vertex, that corrects the underlying cause of CF is showing tangible evidence that it can slow the irreversible decline in lung function and transform lives for half the CF population.
Most of my current arsenal of antibiotics help prevent infections settling in while other drugs help to loosen the mucus in my lungs, but I have never taken any therapy that tackles the fundamental problem.
Why isn’t this news in the ‘Good’ column of this article I hear you ask? The ugly side of this new drug is that it’s not available on the NHS after it was rejected by funding bodies in England and Scotland.
Yes it is costly and there could be side-effects but I have spoken to CF friends who have trialled it and they have definitely benefited from taking it, whether it be coughing less, more lung function, increased energy, reduction in hospital visits or raised BMI.
A key element of mindfulness is the ability to put oneself in the shoes of another person. Well I ask you to put yourselves in the shoes of myself and thousands of fellow-CF patients across the UK and Europe.
We know this drug is available; we know that there’s heartening evidence that it could dramatically improve our health BUT it’s not being funded for us. Talk about a tantalising carrot being dangled in front of us.
Alongside the CF Trust, I am helping to campaign for Orkambi to be made accessible for the UK CF population. Please sign this online petition to help get this drug over the line. Let’s make some noise!
I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.
Yours cup half full.
For more information on the drug Orkambi, the BBC article below has a wonderful story of a 15 year old CF girl whose life has been transformed since she’s been on it…
* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,000 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.