FOR Kenny Douglas, it was an almost unbearable wait to find out whether he would live or die.
The father-of-two suffered from pulmonary fibrosis, a rare and little understood disease that causes scarring of the lungs.
The symptoms had been present for almost two decades, but had started to become more severe in the last five or six years – before reaching a crisis point in the last six months.
As wife Sally recalls, it got to the stage where Kenny – previously a soldier, marathon runner and self-confessed rugby fanatic who played for Heriot’s for more than five years – was unable to walk a dozen yards before doubling up with severe shortness of breath.
But just as things were taking a turn for the worse, the family was given the news it had been waiting for – after two long years, a donor had finally become available.
Elated, the Douglases made the five-hour journey from their home in Ottawa – where they had emigrated to from Scotland more than ten years ago – to the Toronto General Hospital, and last month Kenny received the double lung transplant that promises to change his life forever.
The 47-year-old, who was based in Edinburgh when he served with the Royal Scots regiment, is now recovering in hospital after the marathon 15-hour operation that left him unconscious for more than two weeks.
As the family readily admits, it has been a long, tough journey full of heartbreak and difficult decisions – but a miraculous campaign of support for Kenny has helped lift their spirits even at the darkest of times.
It all began when four of Kenny’s friends sent the family a photo of them holding up signs proclaiming “Go Kenny D” on the day of his operation. When Sally uploaded the picture to the internet, it sparked a wave of similar pictures from concerned friends and family eager to lend their support.
Soon it had become something of a worldwide craze, with First Minister Nicola Sturgeon and movie star Ewan McGregor even capturing snaps of themselves holding up the slogan.
On Friday, former members of the Royal Scots gathered at the Hawes Inn in South Queensferry to join in with the effort from 3300 miles away and rally round one of their own.
Kenny served with the famous regiment for 18 years, based at Edinburgh Castle and Dreghorn Barracks, and saw action in the first Gulf War, Bosnia and Northern Ireland.
Now the surge of positive energy that the ordeal has generated has inspired the brave family to tell its story in an attempt to urge others to join the donor register and potentially save a life themselves.
Speaking from hospital, Kenny, who is originally from just outside St Andrews, said the vital operation to give him new lungs had “saved his life”.
“Before the transplant the simplest of tasks required maximum effort and much of my time was spent trying to catch my breath or gasping for air,” he said.
“Thanks to my donor I now look forward to playing sports with my sons, dancing with my wife and a long-awaited return to running. My donor has given me the greatest of gifts – the gift of life.”
He added: “Although I left the Royal Scots more than nine years ago, it is true to say ‘once a Royal Scot, always a Royal Scot’. To see members of our regimental family coming together to support me means the world to me and is a huge motivator as I work toward recovery over the coming months.”
Talking to the Evening News, wife Sally, 46, remembered the moment the family was told a donor had been found and the mix of emotions she had been hit with.
She said: “He had two false alarms before, which is not uncommon, so it’s very difficult to explain what you feel. You brace yourself for being let down again.
“And then there’s the fear of the enormity of the surgery and all the things you have to say to somebody at the last minute, and the realisation that your time has come and this is the chance for a new beginning.
“It has been a long journey. Watching the person you planned to grow old with deteriorate from a marathon runner to a man unable to cross a room unaided has been utterly heartbreaking.
“It changed everything. It left me feeling helpless, angry, diminished and unbearably sad. It impacted on our relationship emotionally and physically. Our children have had to grow up knowing too much, too young.
“It affected our financial stability and our ability to look confidently into the future. But our experience has brought great heights, too. Ken and I have found ways to celebrate the most simple things in life.
“Love, friendship, the country we live in and its safety, a blue sky, laughing with our kids – perhaps these things would have been a little lost on us or taken more for granted with an easier path.
“Two or three years ago, Kenny would have been walking around the park, but in the last six months he was struggling to do more than ten to 15 steps. His spectrum of movement was reducing all the time. It was very frustrating for him, as he was a marathon runner and rugby fanatic.”
Sally and Kenny’s moving call for more donations comes after plans to introduce a “soft opt-out” system for organ donation were published at Holyrood by Labour MSP Anne McTaggart.
Under the new proposals, citizens would automatically be considered an organ donor unless they chose to opt out themselves. This would replace the current system that requires a proactive choice by an individual to become a donor on their death. Ms McTaggart, who introduced the Bill last month, cites evidence that three people die every day across the UK waiting for a transplant – insisting her legislation will save lives.
And last week it was revealed the number of deceased organ donors in the UK has dropped for the first time in more than a decade.
Health chiefs blamed the drop on fewer people dying in circumstances where they could donate, as well as the number of people giving their consent remaining stubbornly below 60 per cent.
NHS Blood and Transplant, the organisation which leads organ donation across the UK, is calling for everyone in Britain to discuss the issue and decide what they would do if called on to donate.
A spokeswoman warned: “Unless there is a revolution in attitudes to organ donation, people waiting for a transplant will continue to die needlessly.”
For her part, Sally just hopes her family’s story will encourage others to take the simple step of registering as a donor.
“It’s an amazing thing that has happened and Ken and I are just really keen to harness this and take it forward,” she said. “The biggest problem is there’s just not enough people registered. It’s such an easy thing to do.”