Skip to main content
Open this photo in gallery:

Colleen Kohse was the longest-living cystic fibrosis double-lung transplant survivor in Canada.Courtesy of CF Canada.

As a little girl, Colleen Kohse watched her older sister, Valerie, slowly die from cystic fibrosis – a genetic disorder that she, too, had been diagnosed with at birth. She watched as their mother upended Valerie over a V-shaped draining board in a desperate effort to clear her lungs of phlegm; the near-daily visits to doctors and physiotherapists, frequent hospitalizations and attempts to sleep in an oxygen tent. She watched until there was no need to do so any longer.

For years, Ms. Kohse, who first showed symptoms of CF when she was 10, knew that her sister’s fate would probably be hers, too; when she was born, the median age of survival for people with the disease was a mere six months old. But instead of giving in, that knowledge only made her more stubborn. It made her ride horses, play the accordion, go downhill skiing and read as many books about faraway places as she could. And, in 1988, after her doctors said her lungs were little more than mush, it made her decide to go to England to have a heart and double-lung transplant – a complicated, cutting edge surgery that was not yet being done in Canada.

The risk paid off. Ms. Kohse, who died in Vancouver on April 16 at the age of 59 from complications related to cancer, was the longest-living heart and double-lung transplant patient in Canada, at once a trailblazer and tireless volunteer, reaching out to CF patients and their families across Canada to give support and commonsensical counsel.

For some, her very existence was hope itself.

“Colleen lived as long with her new set of lungs and heart as she did with the old ones. It would have been 30 years this October,” said Leona Pinsky, the mother of a daughter with CF, who serves as vice chair on the board of directors of Cystic Fibrosis Canada, a national non-profit organization that raises funds for research and patient care.

The two women first met in 1999, after Ms. Pinsky and her husband became involved with the organization. The relationship grew over the years as they planned the CF fundraising gala, called 65 Roses because it is so much easier for children to say that than “cystic fibrosis.”

“We loved seeing her get a bit grey around the temples or having to put on a pair of reading glasses because before her, CF patients didn’t tend to get to the age when they’d need them,” Ms. Pinsky said. “And when she’d complain about getting wrinkles, we’d tell her we loved them.”

Todd Homenuk, 38, who was diagnosed with CF as an infant and has not yet had a transplant, hopes to do for the next generation what Ms. Kohse did for him. The married father of two, who designs infrastructure installations for B.C. Hydro, said it was scary when he was a child that so few CF patients had survived into adulthood. Today, the median age is 51.

“She was an example that you can have a life, and a normal one at that,” he said.

Cary Feldstein, a software engineer who grew up down the street from the Kohse family home in Vancouver’s leafy west-side Shaughnessy neighbourhood, was diagnosed with CF when he was nine years old. At the time, she helped him, and his family, adapt to their new reality. Years later, when his doctors told him his condition had deteriorated to the point he should travel to Toronto for a double-lung transplant, he turned to her for advice.

“Colleen knew how much support I had here,” Mr. Feldstein said. “She told me that I wasn’t at the point of dying and didn’t need a transplant right then and there, so why not wait? And I did.”

In 2014, Ms. Kohse went to visit when he was moved out of the ICU at Vancouver General Hospital following his transplant.

“Welcome to your second life, Cary,” she said. “Take good care of it.”

Ms. Kohse was born in Vancouver on Feb. 16, 1959, the youngest of Fred and Caroline Kohse’s five children, one of whom died as an infant. Her father was a fishing boat captain, absent for such long periods the family once left the Christmas tree up until June so he could at least see the tree when he got home, falling needles and all.

“Our whole life was spent never knowing when our father was coming home,” said Ms. Kohse’s surviving sister, Casseda Parsons. “As kids, we mowed the lawn, painted and learned to do minor patches and repairs. We had to because our mother had her hands full.”

Caroline Kohse spent so much time caring for her daughters, one of the physiotherapists who worked with them called her “Mother Teresa.” First, it was Valerie, who was five years older than Colleen and wanted only to live long enough to get her driver’s licence. She didn’t make that goal. Around the time of her death, Colleen began to show symptoms.

The parents bought the house in Shaughnessy because it was a quick drive to the hospitals and doctors’ offices clustered on Vancouver’s west side. Before, the family lived in Burnaby, beyond Vancouver’s easternmost boundary; sometimes, it seemed they spent all their lives in a car, travelling back and forth.

Ms. Kohse, who attended Shaughnessy Heights elementary and Eric Hamber Secondary School, was a slight girl with wispy blonde hair and who always seemed happy just to be there. Although she was sick for her high-school graduation, she still insisted on going – and she made sure she was present at the 40th high-school reunion, which was held last year.

Although she wanted to be an architect, several semesters at the University of British Columbia proved too much of challenge because, at the time, there was little understanding of a disease that didn’t really show itself on the outside. Ms. Parsons said half of her sister’s professors made allowances when she wasn’t well enough to sit for exams, for example, while the other half did not.

And travelling to Britain for her transplant was a courageous decision because the choices were so stark. Ms. Kohse could not ask for her organs back. Transplant surgery as complicated as hers was still in its infancy. Once it was done, it was done, and either her body would accept the new organs and she’d spend the rest of her life on anti-rejection drugs, or she would die.

Ms. Kohse spent nine months recuperating with her mother in an apartment, closely monitored by hospital staff. She was given a journal in which she diligently recorded everything from her blood pressure readings to the quality of her sleep the night before.

Life after the transplant was filled with travel to places such as Paris, Lake Como and Miami, and fighting for more research funding and public understanding of cystic fibrosis in general.

On Oct. 22, 2016, the 28th anniversary of the transplant that saved her life and the eve of the 65 Roses Gala for Cystic Fibrosis, which she had helped to plan, she wrote in a Facebook post : “It’s truly amazing to be here after such a long time. … I’ll be drinking, eating and dancing until midnight to celebrate my special day and a special day to help everyone with cystic fibrosis survive and thrive.”

Ms. Kohse leaves her mother, Caroline Kohse; her brother, Larry Kohse; her sister, Casseda Parsons; two nephews; and one niece.

Interact with The Globe