Kevin’s taking life one breath at a time

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The man in the photograph is not well. Sallow-skinned and gaunt, a nasal cannula snakes over his ears, hangs from this throat and disappears from the frame. Turned away from the light, his eyes are closed, a thin arm stretched out from his hospital bed.

The picture was taken in May last year. Kevin Bruns weighed eight stone following a two week holiday to Disneyland Florida for a friend’s wedding and three days on the sofa at home.

Kevin Bruns has cystic fibrosis. He and his wife, Angie, are holding a wedding event to raise money for a cystic fibrosis charity in March.

Kevin Bruns has cystic fibrosis. He and his wife, Angie, are holding a wedding event to raise money for a cystic fibrosis charity in March.

For most people, that kind of schedule would be restorative rather than lethal, but Kevin, 46, suffers from Cystic Fibrosis, a genetic disorder which clogs the lungs and digestive system with mucus, making it hard to breathe and digest food.

Prior to the holiday, he had spent four days in close contact with his toilet due to a bout of food poisoning. So rather than relax and recuperate in the Florida sunshine, an already dehydrated Kevin began to shrivel like a prune, losing weight without realising.

The kicker came on the flight home. What Kevin and his wife, Angie, didn’t know was that on night flights oxygen is reduced to help passengers sleep. A godsend for restless travellers, but when your lung capacity hovers around 25 per cent, and you are already well on your way to bronchial pneumonia, it is a potential killer.

After a 10 hour flight, Kevin was delirious, but it wasn’t until he got off the plane that his body made a statement.

Kevin Bruns

Kevin Bruns

“As I got off I could hear my heartbeat – thud, thud, thud – and all of a sudden I just stopped and it felt like someone had gone through my ribcage, grabbed my heart and ripped it out.

“I couldn’t do anything, I’d gone blue. It was only 20 seconds until I recovered, but I thought I’d died, the pain was that severe.”

For three days, first at his parents’, then at his home in Qwysson Avenue, Bury St Edmunds, Kevin did nothing but sleep.

He insisted he was fine. Just tired. But Angie, a nurse, knew better, and after suffering through his lack of appetite and mood swings, she called an ambulance.

After arriving at West Suffolk Hospital, he was diagnosed with infections, bronchial pneumonia, respiratory failure and septic shock. It turned out CO2 poisoning had addled Kevin’s brain – he was dying and didn’t even know it.

As a sufferer of Cystic Fibrosis – known as ‘CF’ – it wasn’t the first time Kevin had gone nose to nose with Death. He says he has been close to dying on two occasions; the doctors say it’s more like six or seven.

To anyone with knowledge of CF, it’s no surprise: the disorder offers an average life expectancy of 31, making Kevin an over-achiever. It’s also the age at which his sister, a fellow CF sufferer, died in 2002.

He believes his odds-defying longevity can be put down to a self-made diet and exercise regime which he began to research at 26. It’s at that age that medication gets stronger to fight the disorder, with side effects including going deaf, blind and losing kidney function.

It wasn’t a path Kevin was willing to take – much to the annoyance of his doctors. But his recovery after the episode in May proved that his years of self-imposed trial and error were not in vain.

“When I came out they said it would be a minimum of 18 months before I would be capable of doing anything.

“Within three months I’d reached my target weight and they didn’t know what was going on.”

Kevin’s weight gains were a mixture of science and common sense. He eats no processed food in order to avoid toxins. He also ignores warnings over saturated fats, saying the research backs him up.

He also did something obvious to anyone wanting to gain weight – he ate more. For instance, the hospital instructed him to drink two carb-loaded drinks a day. He had six instead.

Despite being in much better condition, the side effect of his rapid recovery is that he now has the job of turning three stone of fat into muscle through exercise; a tough ask for a person with normal lungs. For CF sufferers, it’s Everest.

Their reduced lung capacity means oxygen is in short supply, putting energy at a premium. For Kevin, it is a constant concern.

“Sometimes I feel like I’ve survived, but what’s the point if all I do all day is keep well?

“It takes me four hours to get ready to go to the shops, because I have to eat and have physio to make sure my lungs can cope. If I don’t sleep for 10 hours a night, I can’t manage.

“A lot of times I feel fine and normal, and it’s only when you try and do something that you think ‘I’m knackered’. That makes you aware that everything’s not rosey.”

He certainly looks fine, and draws his fair share of sceptical looks when taking up a disabled parking spot at the supermarket.

It’s an attitude that annoys Kevin, but he has bigger things to worry about.

May’s scare was a reminder of how precarious a position he is in, and he admits to having felt ‘helpless’ at his lowest ebb last June.

“There was a moment where Angie had to take me into the shower. I saw myself in the mirror and just broke down.

“I felt scared. I was thinking ‘what if things don’t turn around?’ I couldn’t have lived like that.”

Illness is a constant fear – a stranger’s sneeze in a shop is a potential death sentence – and Kevin has picked up a cold when I visit.

A week later, an email from Angie tells me that the virus has taken root, and Kevin is on antibiotics. Another week passes and Angie says Kevin is improving.

Everyone carries a fear of death, occasionally brought into sharp relief by a tragic accident or illness of family or friends.

It would be easy to think that CF sufferers live with a much starker image of it, not as a distant inevitability, but as an everyday reality.

For Kevin, as pro-active and positive a person as you could meet, it is a factor which has begun to weigh heavy. It means he takes each day as it comes.

“Having CF, and CF having you, are two different things. I’ve always had CF, it’s never had me, and I’ve always been in control and now I don’t feel like I’ve got as much.

“Now I’m aware there’s a possibility that if I get it wrong, it will be the last time I get it wrong.

“There is a future though, that’s the biggest thing, at least there is one, whatever it holds, because there well could not have been.”

A wedding reception themed event is being held on March 8 to raise money for the Cystic Fibrosis Trust.

The 65 Roses Wedding Reception, based on the theme of An Affair to Remember, will take place at Bury St Edmunds Farmers Club. The evening will be run as a wedding reception, allowing prospective brides the chance to meet local wedding suppliers.

Tickets are £10 from or by calling 0844 357 1075.