Hélène’s Story: Breathing Easy With Two New Lungs
Patient Perspective Last month, Hélène celebrated her 24th birthday and, more importantly to her, her third ‘lung-iversary’.
Hélène was misdiagnosed with asthma as a teenager. As her breathing worsened she found herself in and out of the hospital before finally being diagnosed with Idiopathic Pulmonary Fibrosis, a disease that results in scarring and hardening of the lungs. The disease eventually reduced Hélène’s lung function to only six percent.
“If I didn’t get those lungs that night, I wasn’t going to make it.”
To save Hélène’s life, a double lung transplant was required — and soon. She relocated from Ottawa to Toronto to be within the response radius of UHN, home of Canada’s top transplant program. After months of waiting, a pair of lungs became available. But there was one problem.
“For an average person my age and size, their lungs should be about 3.1 litres,” says Hélène. “I was down to 0.2 litres. And the donor lungs were 7 litres. But if I didn’t get those lungs that night, I wasn’t going to make it.” Through a process known as normothermic ex-vivo perfusion (or just “ex vivo” for short), the lungs were put on a life support system independent of the donor’s body, then to be operated on and reduced to Hélène’s size. “The process was first developed in Sweden,” says Thoracic Surgeon and Senior Scientist Dr. Thomas Waddell, who performed Hélène’s surgery. “But it was really perfected here at UHN by Dr. Shaf Keshavjee and Dr. Marcelo Cypel.”
Growing the organ pool with ex vivo
Ex vivo is a game changer for transplantation as a whole. The biggest bottleneck to the number of transplant surgeries performed has always been availability of donor organs. With ex vivo, organs that would otherwise have been turned away as unusable can be evaluated, repaired, preserved, and transplanted. “In Canada we have a very high organ utilization rate,” says Dr. Waddell. “We were already at 35 percent and now with ex vivo, we’ve pushed that up to 45 percent. In countries worldwide where the utilization is closer to 10 or 15 percent, the technology has the potential to double the number of transplant surgeries that can be performed.”
“Before the transplant, I couldn’t dress myself in the morning. I couldn’t even do the basics ... Now I have my own place. I can cook; I can clean; I can take a shower standing up without losing my breath."
That’s welcome news as transplant waiting lists continue to grow longer around the world. “As the population is aging, organ failure is becoming much more common and so the need for transplants is increasing,” explains Dr. Atul Humar, Director of UHN’s Multi Organ Transplant Program. “Last year we did over 500 transplants. About a quarter of all transplants in Canada were done here at UHN. In the last decade we’ve almost doubled the number of transplants we perform.” UHN is known not only for their volume and their research, but also for taking on the difficult cases like Hélène’s. Three years on, she couldn’t be more grateful.
“Before the transplant, I couldn’t dress myself in the morning. I couldn’t even do the basics,” says Hélène. “Now I have my own place. I can cook; I can clean; I can take a shower standing up without losing my breath. It sounds so silly, but losing the ability to do little things like that, especially at a young age, really makes you realize how much you take for granted.”
Hélène may stress the importance of the small things, but what she has accomplished in the past three years is very large. Hélène has become a crusader for transplant outreach, travelling the country, and even tearing up the rug on The Ellen DeGeneres Show, to raise funds for transplant charities and to encourage people to consider becoming organ donors themselves. “There are so many key players in my recovery,” she says. “But the donor family is the main reason I’m here. They made that surgery possible.