All I ever wanted

I reflect on another year defying the odds with cystic fibrosis (CF)* and the one gift I wanted more than anything, that until recently, proved the most elusive…

My ask of Santa

I’m extremely low maintenance as far as the receipt of festive gifts. For 49 years, the ultimate present would be to reduce my suffering in the form of a new medication. There are not many people who have ‘new medication’ at the top of their list from Santa?!

I appreciate all presents, but all I ever wanted was the precious gift of improved health. To be honest, if a wonderful new drug was gift-wrapped and left under the Christmas tree, you would have seen more joy from me than receiving any other type of gift!

More than anything in this word – the precious gift of medication!

It has now been over two years since I started the CF modulator drug Kaftrio, and it continues to make a big difference to the quality of my life and it has dramatically reduced my suffering and risk of death.

I have more energy, vitality and have been able to incrementally increase my lung function and fitness by playing competitive field hockey and regular trips to the gym. These are only 1% improvements but compared to how I was feeling pre Kaftrio, it seems amazing that I can actually feel better as opposed to regress.

I am living proof that your greatest wealth is your health. Being able to draw a deep breath without pain and to laugh without causing a coughing fit feels the most momentous present for me.

The gift that keeps on giving

The drug has helped me but only to a point. It stops the mucus production in my cells. It doesn’t alleviate the 49 years of lung damage. Playing sport and running are still damn hard but it’s night and day to how it has was before.

One sideways gift has been able to play league hockey in the same team as my 15 year old son Felix. We play most Saturdays in a competitive London league, which is such a wonderful activity for me (and hopefully him!). He plays in midfield and as my healthy clone, he’s able to run hard and has been winning a few player of the match awards, which makes Katie and I so proud.

Felix & I playing together for a dad’s & son’s London hockey league

I play in defence and can make more of an impact on the game with the positive effects of Kaftrio. I struggle to put into words how blessed I feel that I don’t cough any more when running and playing sport!

Still, there’s always room for humour. On a particularly cold day, we were discussing about the need to wear an ‘under armour’ type layer underneath our club hockey top. Felix told me that he wouldn’t need the extra layer as he gets so hot with all the running he does. He then added, “You don’t really run in your position, so you need the extra layer!”

I had to remind him that the new drug is good but not that good…

My new normal

One important realisation is that despite Kaftrio making a substantial improvement to my health, I still need to endure two hours of meds and therapies each day for my CF and diabetes. There is no remission period where I can feel normal enough that I can simply stop my medical regime.

In fact, half of my drug intake is in place to counter all the side-effects of heavy doses of previous drugs (like steroids) that kept me alive when I wasn’t expected to live that long. Also, I am now dealing with the associated issues of getting older with CF. I am now officially called a ‘geriatric CF patient’ by my doctor! I’m not sure if this is a compliment or not?!

Should auld acquaintance be forgot?

At this time of year, I poignantly remember those CF angels who are no longer with us, who all deserved to live long enough to feel the benefits of Kaftrio. They fought so very hard and will always be in my heart.

I’m also mindful of the 10% of the CF population who are unable to take Kaftrio, due to their CF genes. I know there’s a lot of great research and trials relating to gene therapy which I hope will cause a positive improvement in their lives in the near future. My thoughts will be with them until that fine day.

This Christmas, asking for the best possible health for 2023 will still be on my list from Santa!

I wish everyone season’s greetings and a healthy and happy new year!

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?’)

Worth a view – I recently shared my survival story with nebicorum, promoting the importance of PARI nebuliser equipment.  

* Cystic Fibrosis is one of the UK’s most common life-threatening inherited diseases, affecting over 10,500 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.