The Good, the Bad and the Ugly

The Good, the Bad and the Ugly neatly sums up the last few months in my battle with the chronic illness cystic fibrosis (CF)*…
good-bad-and-ugly

The Good
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.

The Bad
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.

The Ugly
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.
Tim

Tim Wotton (author of Award-Winning CF Memoir ‘How have I cheated death?’)

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…
http://www.bbc.co.uk/news/health-37806218

* 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.

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About Tim Wotton

I live with my lovely wife (Katie) and spirited nine-year old son (Felix) in Morden, Surrey; working full-time as an internal communications specialist in the Oil & Gas sector. I have played sport, particularly hockey, tennis all my life and now regularly go to the gym. Cystic fibrosis has been a huge factor in my life, but not one that overshadows it. I have always had great support from my loving family - parents Margaret and Douglas (RIP), elder brother Chris and my twin brother Jez. I have many rich life insights based on knowing I have a reduced life expectancy and battling against the odds for over 44 years. My eyes and heart have been opened by my health struggle. I feel empowered to share my life lessons to help anyone with health and life issues to overcome. My passions include Paul Smith clothes, dress shirts (believing that it's enlightening to dress like it's your last day on earth), Alfa Romeo cars, spicey food, Harlequins and England rugby, Southampton FC, Wimbledon village and common, Dorset, seascapes, sunsets and military history. I am available for public speaking on this subject matter and can be contacted via timwottonAThotmailDOTcom. I have written a book 'How have I cheated death?' based on my euphoric countdown year to 40 which was published in 2014 and won the 2015 'Best Achievement' Award at the UK People's Book Prize. It is available via e-book, audiobook and paperback at Amazon and to order from UK bookstores. Go to the relevant sites below or in the UK go to a WH SMITH, Waterstones or Foyles bookstore and give them my name, book title and this ISBN number (9781849637190). It’s also available via GARDNER’S, BERTRAM’S, AUSTINMACAULEY.COM, BLACKWELL’S, PLAY.COM, AMAZON.CO.UK AND AMAZON.COM
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11 Responses to The Good, the Bad and the Ugly

  1. mitch.rossiter@gmail.com says:

    Your blogs and posts… Always amusing. Always inspiring. Always humbling. Enough said I think. God bless Michael

    Sent from my iPhone

    >

  2. Olivia says:

    I was wondering just the other day how you’re doing!
    It’s been ages since you posted anything. I’m sorry the NHS has rejected Orkambi. Let me just say that Jeff and I attended the hearing at which the FDA advisory board voted to approve Orkambi, over two years ago now. It was an emotional day. The success stories from trial recipients were amazing. Sadly, it’s not working out so well for everyone.
    I have to admit, the statistics shared at the hearing were below normal acceptance but the board was certainly swayed by the testimonies.

    Jeff started it last spring and spent the whole summer with tightness of breath after each dose. He napped a lot, just lying there breathing and lost a lot of weight. Eventually he had to quit.

    SO MUCH has happened here since I last commented under one of your posts. We have 9-month old twin boys, Owen and Toby. Born at 35w, weighing 5lb 5oz and 3lb 14oz, respectively. I was on bed rest for 10 weeks on meds to control contractions as well as metformin for gestational diabetes.
    They are happy, healthy boys. They take everything out of us every day, but they’re utterly fascinating and so worth it. God I wouldn’t do it again though if you paid me. No idea how women have more than one go.

    Unfortunately, Jeff’s health declined steeply just after I recovered from having the babies, and was in bed for over a week. During that time he decided to admit defeat and save his health by going on disability. He was admitted to hospital for almost a week and spent a month on IVs.

    We decided to accelerate retirement plans, sold the big house and moved down to Florida two months ago and are LOVING IT.
    His clients miss him a lot. Every week he gets calls from them as they look for him at the branch only to find he’s gone.
    But he’s regaining energy, lung function, is on an appetite stimulant, and has regained over 10lb with about 10-15 to go!

    He’s transitioning from his longtime CF clinic at Johns Hopkins to the one here at Tampa General and he actually prefers them. They seem more cutting edge and efficient and they have a high volume successful lung transplant team. While JH turned him down, TG is evaluating him next month to get on the list.

    So here we are. New chapter!

    • Olivia says:

      Forgot to mention, Jeff exercises every day now, alternating swimming and weightlifting and every week sees his performance improve.

      Also, Once he does get on the list, I’he continues to improve at this rate, and assuming new drugs come out, if a new pair of lungs comes along and he’s doing well, he can choose to defer.

      • Tim Wotton says:

        Dear Olivia and Jeff,
        Great to hear from you with all your news. Huge well done on Owen and Toby and for your new life in Florida.
        I’ll email you directly to catch up.
        All the very best
        Tim

  3. Margaret Wotton says:

    Again a most meaningful blog, well worded and of course I’ll sign your petition.
    Much love
    Mum xxxxxxxxxxxxxxxxxx

  4. Andrea Barriaux says:

    Your blog was really uplifting & moving. I want to ask adamantly that Orkambi by Vertex be made accessible for the UK CF population so please let me sign your petition, Tim. Our very best, Andy & Jean-Pierre

  5. Smolik, Sam L says:

    There is no ugly when it comes to my good friend Tim Wotton. I’ve signed the petition and UK government officials can contact me any time.

    So glad to hear about Felix and his field hockey!!!

    All the best,
    Sam

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