Margaret Benson remembers the first time she was able to take a deep breath. The air filled her lungs and "it kept on going and going," she said. "It was the most exhilarating and extraordinary feeling."
At 40, Benson was running out of time when she was given another chance at life, thanks to a double lung transplant.
Today, 15 years later, Benson still lives in a state of grace, profoundly thankful for the gift of a family she will never know.
"It's mind boggling for me to understand that kind of love, that selflessness," she said.
"How do you thank somebody for saving your life? There are no words in the English language that are appropriate enough."
This week, Benson and her husband Brian joined 13 other organ donor recipients and families of organ donors from around the world on the Rocky Mountaineer's annual Life Changing Train for Heroes journey.
The train left Vancouver Tuesday and will arrive at Lake Louise today, where Benson will take part in a special ceremony honouring organ donors. Benson hopes her own story will also inspire others to register as organ donors.
For Benson, who was born with the genetic disease cystic fibrosis, taking that deep breath came after a fourdecade struggle.
Benson said her mother knew something was wrong with her daughter from an early age - as a child, Benson didn't gain weight, had a terrible cough and got bronchitis and pneumonia.
"Imagine yourself drowning, but not being in water," Benson said.
When the diagnosis finally came, doctors gave her parents a bleak prognosis. While management of the disease has improved considerably since then, at that time, CF patients rarely lived past their teens.
Benson said she refused to accept that. "I really didn't believe that was going to be my fate."
Despite the statistics and sporadic hospitalizations, Benson did beat the odds - for a while. "I was able to live a fairly normal life," she said.
She travelled and got married. She became a teacher and taught elementary school in North Vancouver. As her disease worsened, Benson often required oxygen to help her breathe. The kids called her "the tube lady," she said.
In her late 30s, however, Benson's condition worsened. Everything was exhausting - even getting to the bathroom. She had to stop teaching.
By early 1999 she was put on the waiting list for a double lung transplant. She knew her chances weren't great. Her blood type - B positive - narrowed down the options considerably. At the time, some people on the list for lung transplants were waiting two years or longer. "I knew I didn't have two years," said Benson.
She carried a pager and always had a bag packed. Benson and her husband were at home on the night in early December when the phone rang.
Brian picked it up and heard the words, "We might have a set of lungs."
At Vancouver General Hospital, Benson was put into a room and started on anti-rejection drugs. Then she and her husband waited. Around 5 a.m., a nurse finally came into the room and whispered, "It's a go."
She still gets emotional talking about that moment, when life and death were both hanging in the darkness.
"Knowing someone had to lose their life in order for me to live, that's something I struggle with all the time," she said.
The transplant process in B.C. ensures anonymity for donors and their families, so most recipients will never know who their organs came from.
Benson knows only that her lungs came from somewhere in small-town B.C. and that they came from a child.
She and Brian said a quiet prayer for the family of her donor. Then she was wheeled into the operating room.
The intricate surgery took more than seven and a half hours. There were complications and further surgery that night.
There were setbacks and further recovery. Then finally, there was her first breath taken without the aid of the ventilator.
She remembers being told, "If you can walk up a set of stairs we'll be able to send you home."
On Dec. 29, she told them, "Let's go for the stairs." Benson is now a volunteer advocate with the Canadian Transplant Association.
She is also a medal winner and has been a flag bearer in the World Transplant Games - an athletic competition for those who have received organ transplants. "We say you have to test positive for drugs to compete in our games," she laughed.
Benson takes a handful of pills every day - up to 20 of them every morning, four more at midday and up to eight more at night. The regimen of anti-rejection drugs is one she will have to follow for the rest of her life, but it is more than worth it.
Ten-year survival rates for transplant patients vary. For lung transplant recipients, the figure hovers around 55 per cent. But Benson is used to beating the odds. "I've had an extraordinary life," she said.
She would like more people to have the second chance she's been given.
Last year, there were 346 organ transplants done in B.C., but there are still about 500 people on the waiting list, said Peggy John, spokeswoman for B.C. Transplant. In 2013, 30 people died while still on the waiting list.
While recent polls show up to 95 per cent of British Columbians support organ donation, fewer than 20 per cent of people have actually registered to become organ donors.
A variety of misconceptions about organ donation keep people from signing up, said John.
A simple online registration system has replaced the driver's licence decals of the past, for instance. There are also no age limits. So far the oldest organ donor in Canada was 93, said John, while the oldest in B.C. was 79.
Part of the issue is also undoubtedly our discomfort about death, and in feeling the shadow of the unthinkable.
For Benson, those will always be with her - along with gratitude and joy for the life she has been given - in every breath she takes.
To register online as an organ donor go to transplant.bc.ca
