A moorlands man whose lung function had at one point dropped to 29 per cent, has recorded a song about how he feels, having been given compassionate access to a life changing new cystic fibrosis (CF) drug. The song by Cheadle man Marc Cotterill called ‘Thousand Years’ has created a huge buzz online and particularly within the UK cystic fibrosis community, who have just received news that the NHS are to fund Kaftrio - a ground breaking, life-saving drug - following news of a deal with Vertex Pharmaceuticals announced on June 30.
A moorlands man whose lung function had at one point dropped to 29 per cent, has recorded a song about how he feels, having been given compassionate access to a life changing new cystic fibrosis (CF) drug.
The song by Cheadle man Marc Cotterill called ‘Thousand Years’ has created a huge buzz online and particularly within the UK cystic fibrosis community, who have just received news that the NHS are to fund Kaftrio – a ground breaking, life-saving drug – following news of a deal with Vertex Pharmaceuticals announced on June 30.
Marc said: “The song literally wrote itself. I wrote it the day I received the call from my cystic fibrosis team, telling me my application for Kaftrio had been approved.
“The words poured out of me, so did the melodies, almost as if someone else was writing it for me.”
That day, at the beginning of March this year, marked the end of a lifetime of gradual decline in Marc’s health as he battled daily against the disease.
Cystic fibrosis causes thick, sticky mucus to build up in the lungs and other organs of those affected. This causes inflammation and infection. It also has a knock-on effect on overall health and quality of life.
Marc said: “When I was younger I was relatively healthy with it.
“In my mid-20’s my lung function began to slowly deteriorate.
“When I was about 28, I really started to notice that exercise and any exertion was much harder than I was comfortable with.
“Then three years ago my lung collapsed and I was hospitalised for three weeks.
“At that point I had been taking another drug called Orkambi, unfortunately however this was not effective. I gained compassionate access to Orkambi when my lung function dropped to 40 per cent.
“I always fought hard by being compliant with treatments and exercising regularly, which helps keep the lungs clear and strong, and I have always continued to work despite setbacks.
“But I eventually had to request to work from home in the afternoons, so that I could fit in an extra physiotherapy session.
“By the end of 2019, I was having to do around five to six hours of treatment (physiotherapy and nebulisers, etc) every day just to function.
“One of the biggest problems that I then had to face was a vascular issue.
“My veins seemed to react negatively towards intravenous (IVs) therapy, which is the main line of defence against chest infections.
“The worse my condition became, the more IVs I required, but this led to a narrowing of veins and some collapsed completely.
“To solve this I opted for a port, which is a permanent IV line inserted into a main artery.
“It was a huge decision for me mentally – I always felt it was something that I should try and avoid at all costs, but I eventually had to face facts.
“The port worked brilliantly for around 18 months but then I started to experience pain.
“The artery that the line sits within caused a blockage and began to narrow, just as my veins had.
“I was potentially facing vascular surgery that would have involved having a huge incision from my wrist to my armpit in an attempt to construct a new robust vein that might somehow withstand IV lines.
“I was really close to agreeing to the surgery when I heard that my application for compassionate access to Kaftrio had been approved.”
Having had to come to terms over many years with his diminishing health and the restrictions on his lifestyle, Marc was stunned at how quickly Kaftrio turned that situation around.
He said: “Kaftrio is truly a miracle drug.
“I took my first dose in my car at 11am on March 3 this year and the transformation happened overnight.
“I experienced a purge of mucus during the first day and had the best nights sleep I have ever had.
“The next day, I woke with no cough for the first time in over 20 years.
“I had become used to waking and coughing so violently that I would get a headache. It is quite difficult to believe the improvement in my health.
“After a couple of days I was getting up at 6am to work out in the garden before work or treatments.
“Previously I would have needed to do an hour of treatments minimum before I could even attempt to start my day.
“Before Kaftrio, CF was working against me, impacting every part of my body, but that has now been thrown into reverse.
“Because my lungs are now working much more efficiently, health and quality of life has dramatically improved.
“My lungs no longer produce excess mucus, mucus that can easily be swallowed thoughout the day.
“This leaves my stomach empty, sending my appetite through the roof. The increase in food leads to more energy, energy that fuels my workouts like never before.
“When everything works in your favour, everything improves.
“Einstein was said to have called it the ‘eighth wonder of the world’ thanks to the snowball effect of ‘compound interest’. With that logic, Kaftrio must be the ninth.”
Without access to Kaftrio, Marc knows that his life expectancy would be considerably shorter.
He added: “People often ask me what it feels like to experience the benefits of Kaftrio.
“The best way I can describe it, is that it now feels like I’m living life with a thousand years ahead.
“And my song ‘Thousand Years’ is my way of expressing that feeling and to give hope to those who are about to experience the same.”
The song ‘Thousand Years’ is now available to pre-order (as of yesterday – Tuesday, July 7) and will be available to stream, buy or download on Friday (July 10).
Any monies raised from the single will be shared between the CF Trust and the CF Holiday Fund – for which Marc is a trustee for.
The song will be available at: http://itunes.apple.com/album/id1521130895?ls=1&app=itunes and http://itunes.apple.com/album/id/1521130895, as well as all other major music online platforms.
Last month we featured a tribute to Marc’s father Rod Cotterill who sadly passed away on April 12. Within the tribute, we featured that Marc had written and released a song for his father ‘Great Man’.
Marc said: “Great Man did really well. At one point it hit number 62 in the iTunes chart and was surrounded by the likes of Ed Sheeren, Bowie and Harry styles to name a few.”
Marc has also made a new video to launch his Thousand Years song on Friday (July 10) which will feature many CF warriors who stand to benefit from the drug.
Marc added: “As a community we are unable to meet to share our relief and joy at this unexpected opportunity to access a drug that has had almost miraculous results for some people.
“There is the risk of cross-infection between CF patients and also of course, there is now coronavirus. So this song will be our shared expression of our feelings.
“Many CFers have pledged to post about the song and will be sharing their own feelings about having access to a drug that can transform their life.
“Most people with cystic fibrosis have been fighting the deterioration of their health for their entire life.
“And the families of those with the disease, also have their lives taken over by the medical routines, hospitalisations and daily physiotherapy and treatments required to maintain their health (to the best it can be maintained).
“The mental health toll, living with perpetual stress and worry cannot be described to anyone who hasn’t experienced it. No words can state how important this drug is – it’s the closest thing to a cure we’ve ever seen.”
Marc’s launch video can be viewed at www.facebook.com/m4rccotterill/videos/10157785823393402.
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