MARC Cotterill, who lives in Cheadle, has Cystic Fibrosis (CF) and as a result has needed to shield during the pandemic. Here he tells us how he has coped during the past year, how his life has changed since starting to take a new drug for his medical condition, as well as the success of a song he wrote and released during lockdown last year.
MARC Cotterill, who lives in Cheadle, has Cystic Fibrosis (CF) and as a result has needed to shield during the pandemic.
Here he tells us how he has coped during the past year, how his life has changed since starting to take a new drug for his medical condition, as well as the success of a song he wrote and released during lockdown last year.
“I allowed myself to relax the rules I’ve become accustomed to ever so slightly towards the end of summer for around a week or so – nipping to the shop to get my own food felt like a real treat at the time, but it was short-lived as I quickly u-turned back to much tighter restrictions as the numbers started to creep in the wrong direction again.
“Unfortunately, we chose to cancel our usual Christmas celebrations in 2020 due to the threat of the virus and I haven’t seen my sister and family in Wales for longer than I can remember.
“To say it’s all been tough would be a huge understatement – most notably after loosing my father – but I’m also fully aware of how lucky I am.
“Just one year ago my health was at a real tipping point, potentially about to fall past a point of no return, but thanks to Trikafta (now known as ‘Kaftrio’ in the UK), I can focus on getting through this pandemic without the burden of poor health compromising my ability to stay safe at home.
“Casting my mind back, CF was quite a lonely, arduous existence, where at its worst, just getting out of bed and starting the day was almost as tiring as living through it.
“Whilst most reluctantly wake to the sound of their iPhone each morning, people with CF are only too familiar with a morning wake up call which is altogether far more frustrating; coughing. Uncontrollable coughing.
“Over time, the decline we experience compounds. The longer we are lucky enough to live for, unfortunately the worse our quality of life becomes.
“It’s a slow and steady decline where day-to-day the difference isn’t perceived, only when comparing life to how things felt a few years back do we have to accept the reality of the situation we find ourselves in.
“A year ago my lungs were functioning at around the 30-32 per cent range and statistically speaking, these kinds of numbers might have suggested that I no longer had decades ahead, perhaps just a handful of years or so.
“To slow down the rate of decline however, we employ an arsenal of medications, treatments and therapies, and whilst treatments have changed and new things have come along over the years, no treatment for CF has ever come close to the power of the latest one, well… three: Tezacaftor, Ivacaftor, Elexacaftor – these are the compounds that make up Kaftrio.
“When I say those words out loud, it almost feels like the words of some kind of magic spell… and perhaps rightly so, because through experiencing the results, it all feels like complete wizardry.
“At 32 per cent I remember what 50 per cent felt like and I longed for it.
“That was my ultimate goal, to have lungs that would function just half as well as they should. But improvement like that was unheard of certainly without serious intervention and even then it was a stretch.
“So where are they now? 48 per cent! And let me be very clear, that’s not the percentage I sit at, that’s the difference between where I was and where I now find myself. 80 per cent is my new normal.
“And there’s a reason I liken all this to wizardry and science fiction, it’s because this improvement was realised quite literally over night.
“Kaftrio has transformed my life for the better. During lockdown I’ve had the energy to focus on work, start a new business and release a song called Thousand Years.
“Since then that song is one of 22 to reach the finals of the UK Song Writing Contest which had over 9,000 entries.
“Whether it wins or not, it’s an incredible accolade and I’m excited to print the certificate to frame for my home studio as a reminder of what I was able to gain during a year of such loss.
“I want to thank my local newspaper and everyone locally who supported the song release last year by sharing my story, my videos amassed over 63,000 views and collectively raised £6,799 for three incredible charities, and I am now a member of the Board of Trustees for one of these where I intend to make a difference.
“Much of the money raised was thanks to locals who got behind the initiatives, so my heartfelt thanks goes out to you all.
“Stay safe – I look forward to a few drinks when we can all meet up again.”
Marc’s song can be listened to at www.facebook.com/m4rccotterill/posts/10157785825803402.
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