'CF is a serious condition but you have to get up and grab on to life'Sammie's story
In the 1970s, when Luke Peters and Sammie Read were diagnosed with CF, their parents were told if they made it to their teenage years they would have done well.
Now in their 40s, the friends are still living with the condition.
Treatment has come on leaps and bounds in the past four decades, with Sammie feeling the benefits of a new drug and Luke a year into his recovery following a double lung transplant.
This year, classed as clinically extremely vulnerable, they have had to shield from coronavirus, yet they remain positive.
When Luke was diagnosed aged 13 months his parents were told the outlook was ‘pretty bleak’, however he remained fit and well throughout his childhood. It was not until he started working in the aviation industry CF began to affect him.
However, he carried on through his first career, then went to law school to retrain in his late 20s and became a solicitor in the city.
But just before his 40th birthday he was advised to reduce his working hours as CF increasingly took its toll, before he was forced to stop working altogether.
“I was fighting a losing battle and trying to work even part-time was putting too much stress on my body,” said Luke.
“I was a stay-at-home dad for a few years with my son and then my daughter (now aged nine and six). But throughout 2016 my lung function was down to 20 per cent and I was told I needed to get on the transplant list. If I didn’t, I might not survive.”
Luke was on the list from January 2017 until May 2019. In that time he had two false alarms, when he was telephoned in the middle of the night and travelled to hospital for an anxious wait to see if the lungs were viable.
It was a case of third time lucky when, on May 1 last year, he received the third early hours call. After travelling to Harefield Hospital, in London, for the transplant surgery Luke was unconscious for eight days – spending his 47th birthday asleep – and spent five weeks in hospital.
“Then I started making a slow recovery, clawing my way back to some sort of fitness again,” said Luke.
“I’m now doing great. I’ve gone from having a cough most of the day to not having a cough at all. It is literally life transforming stuff.”
The family had looked forward to travelling this year following Luke’s recovery. Those plans are on hold while Luke shields, but he has maintained a positive outlook.
“We have basically not been out the house since the middle of March, but we are lucky to live on the doorstep of lovely countryside where we don’t see anybody, so we can go for walks,” said Luke.
“I think, really, until a vaccine comes along it may be a case of staying in the four walls and only venturing to places where we won’t come into contact with anyone.
“People with CF are resilient. On the one hand lockdown has been tough, but in a way we are more used to it already. We are used to staying away from anyone who might be ill, we are used to time away from family and friends when we are in hospital, we are used to being aware of bugs out there. In a way, it has come as a tough thing, but it’s not something most of us with CF haven’t experienced to some extent.”
Shielding has given Luke the opportunity to focus his attention on a project close to his heart – his book.
While he had always intended to write about his life and CF experiences, being on the transplant list inspired him to put pen to paper to ensure his children knew more about him should he not survive.
“When I went on the transplant list I spent a year coming to terms with it. It is a terrifying thing,” said Luke
“You don’t know if you will be waiting weeks, months or years. It could transform your life or end it. There is a very real chance you won’t survive the operation or the initial four-week period afterwards. The idea of writing a book kept coming back to me.”
Luke started writing in September 2018 and by the time he had the transplant he had written 10 of the 20 chapters. After spending last summer recovering, he started writing again in September 2019 and finished in March.
He hopes to release the book in September and has launched a crowdfunding campaign to fund the self-publishing costs of Coughing It All Up. In addition to raising awareness of CF, the book will raise funds for the Cystic Fibrosis Trust, with 20 per cent of royalties going to the charity as well as a lump sum if the crowdfunding campaign reaches its £8,000 target.
“I wrote the book for my kids, so they would know something about my early life, but now it has taken on a life of its own,” said Luke, 48.
“It is not just a book about CF and my double lung transplant, I have tried to throw in as much non-CF material as possible. It is about what you can do in life despite having CF.
“I have managed to achieve some exciting things. CF is a serious condition, it does impair and impact, but in a way don’t let it rule you and despite it being there, carry on and do what you want to do anyway. You have to get up and grab on to life and go for it.”
“I always say I am so lucky. I have CF, but I have also managed to do all these amazing things. I have done so much, so how could I sit here and think I am not lucky?”
'It is not a cure, but it has made a massive difference to my life.'
Sammie Read, who lives near Stowmarket, has started a new and life-changing drug during her time shielding.
“Before lockdown I was told there was a chance I might be offered a new drug, Trikafta. My consultant requested for me to be able to take the tests three weeks into lockdown and I was accepted,” said Sammie.
“Within six hours of starting I could feel my chest changing. Trikafta is an amazing drug. Previously my lung function was under 40 per cent and it is now at 60 per cent. I can’t believe that in three weeks on Trikafta I am not coughing at night and my resting heart rate has dropped.
“It is not a cure, but it has made a massive difference to my life.”
Sammie, who lives with her husband Ewan and two dogs, said she had missed going to the gym, which she visits four times a week as exercise helps to keep her airways clear.
But like Luke, Sammie has ventured into the countryside during the months of shielding, discovering footpaths she did not know existed despite living in Mendlesham for 30 years.
She has remained positive throughout, but said it hard been hard not being able to visit her son when he moved into his new home after lockdown began.
“The one thing you want to do is support your child,” said Sammie.
“I have been so lucky living where we are.
“CF people are very appreciative of life and every day we have. When you’re little you’re told you won’t make your teens but last year I had a ball for my 40th and raised just shy of £20,000 for the CF Trust. The trust has kept me here.”
For more information about CF Week, go to www.cysticfibrosis.org.uk
More by this authorCamille Berriman
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