First and longest living transplant survivor an inspiration to other cystic fibrosis patients

Colleen Kohse is believed to be the longest living cystic fibrosis patient/survivor of a double heart/lung transplant. She went to England in 1989 for that and is celebrating two decades of good health. She is here with her Louisiana Catahoula Leopard dog named Bandit.
Photograph by: Ian Smith, Vancouver Sun

BY PAMELA FAYERMAN, VANCOUVER SUN

VANCOUVER -- Exactly 21 years ago, Vancouver resident Colleen Kohse became the first Canadian with cystic fibrosis to have a double lung and heart transplant. Today, she is the longest-living CF transplant survivor in the country.

But apart from that, she’s an inspiration to hundreds of patients in B.C. with the hereditary disease, who face drastically shortened life expectancies (37 is the median) unless they get a lung transplant when their own organs have been ravaged by repeated infections. Last year, there were only enough donors for a handful of CF patients to get transplants.

Kohse was just 29 when she went to England, where she and her Langley friend and fellow CF patient Brandy Reich were on a waiting list for transplants at one of the few hospitals in the world where such operations were pioneered.

At a time when all her friends were getting married, starting families and careers, she was told she had only months to live without a transplant. “Here I was, winding down my life like an 80-year old person trying to get their affairs in order. It’s a horrible feeling when everyone is starting life and I was finishing mine,” she said at the time.

That’s when she decided to put all her faith in a British surgeon who had, at that time, done the procedure perhaps 30 times before: cardiothoracic surgeon Dr. Magdi Yacoub, who was knighted by the Queen in 1992.

Though Kohse’s heart was healthy, Yacoub removed it during the six-hour operation and replaced it with one from a young British man who had died in a car accident. Heart transplants are no longer part of the procedure for CF patients but two decades ago, the whole harness of lungs and heart was transplanted in the belief it would result in a higher success rate, Kohse said.

Her heart was given to a man from Greece who lived another 17 years after his transplant.

Kohse, who lost a sister and a brother to CF, admits she was gripped with fear, but she took solace in the fact that if she was to die after her transplants, she’d be happy knowing that her last act was saving another life. In an interview at the time, her dad, Fred, told The Vancouver Sun: “She thinks it’s quite amusing that she got a British heart and lungs transplanted by an Egyptian-(born) surgeon and gave her Canadian heart to a Greek man.”

During her hospital stay, she got a congratulatory call from then prime minister Brian Mulroney and his wife, Mila, a great advocate for CF patients, she recalled Wednesday.

In the decades since her transplant, Kohse has lost count of the many CF friends she has lost, including Reich, who died soon after her own transplant at the same hospital.

“Fifty is considered old age for CF. Transplantation isn’t a cure for CF; it’s an end-stage treatment. It gives us not just a longer life, but a new life,” Kohse said in an interview.

Her health today is very good, an amazing feat consistently noted by her doctors.

“I take about 30 pills a day, including immunosuppressants that all transplant patients have to take for the rest of their life, and then some enzymes to improve the digestive issues that CF patients have. My lungs are still fine,” she said.

Joyce Taylor, manager of the Lower Mainland chapter of the Canadian Cystic Fibrosis Foundation, said Kohse is one of about 30 B.C. CF patients still living after a transplant. About a year after Kohse got her B.C. government-paid transplants in Britain, Vancouver General Hospital opened its transplant unit so B.C. residents wouldn’t have to leave the country. Some patients still must go to Toronto because of shorter waiting lists and facilities that handle higher risk or more unusual procedures.

There are currently 10 CF patients waiting for transplants, and many look to Kohse for hope.

“We’re very proud of Colleen Kohse,” Taylor said. “Her survival success and quality of life helped many people with CF make the very difficult decision to start the assessment process.

“In the last few years, we’ve had a number of people die within a few years of post transplant. This has made the decision once again very difficult as patients look to Colleen and her success and then consider all those who weren’t successful. Unfortunately, for many there’s no choice and they have to hope theirs will be a success story.”

Kohse and other CF patients will be part of the annual Canadian Cystic Fibrosis Foundation gala Nov. 7th at the Pan Pacific Hotel. Money raised will support research. For tickets and information, call 604-436-1158 or go to: http://www.65roses.ca.

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