British Columbia

Cystic fibrosis advocates mourn trailblazer who beat the odds for almost 30 years

Colleen Kohse had a double lung transplant when Canada did not offer the procedure for cystic fibrosis patients. Remarkably, she lived almost 30 years after the surgery and her life inspired patients and doctors alike.

'She was tough. She was a survivor. To lose her is really hard for all of us'

Colleen Kohse died in Vancouver on April 16 at the age of 59. (Sara Hoshooley)

Losing a life at 59 might not seem like something to celebrate — but cystic fibrosis is a fierce adversary and Colleen Kohse won almost every battle.

Kohse was one Canada's first double lung transplant recipients and, remarkably, lived almost 30 years with the new organs. She died in Vancouver on April 16.

Friend and Cystic Fibrosis Canada board member Leona Pinsky said Kohse received the transplant in the U.K. at a time when Canada did not offer the procedure for cystic fibrosis patients.

The success of the transplant and her life afterward gave patients and doctors new hope for the treatment and what life with the disease could be like.

"She was the outlier but it provided tremendous hope for everyone," Pinsky said. "She was tough. She was a survivor.

"To lose her is really hard for all of us. Just makes us realize how far we have to go with research."

Kohse was called an inspiration for both patients and their families as they struggled collectively with cystic fibrosis. (Sara Hoshooley)

Reached out to patients and parents

Pinsky says Kohse was born at a time when most cystic fibrosis patients wouldn't make it to kindergarten. So when she went abroad for the transplant in her late 20s, her life was already remarkable.

After the transplant, Kohse made a point of reaching out to patients or parents with recently diagnosed children to lift their spirits and try to instill hope in them, or share experiences and information.

"She didn't like the attention," Pinsky said. "She knew hers was an incredible story and she was willing to share it but … she would dislike all the attention her death is getting."

Kohse had a dry sense of humour and was very intelligent, Pinsky said. She only worked briefly for her family because of her health but spent the last few years looking after her mother. She was also a prolific volunteer for Cystic Fibrosis Canada.

Pinsky says no plans have yet been made for a memorial.

With files from Deborah Goble