Student who received double-lung transplant is re-listed for surgery

In August 2009, Elspeth Arbow got the greatest gift anyone could receive: new lungs.

Though her first surgery was successful, Arbow’s donated lungs have worn down, and now function at just 25 per cent of their capacity. Because the body sees transplanted organs as foreign objects, the immune system tries to attack them. Immuno-suppressants help, but the new organs can still lose function over time.

“Some people's bodies reject the organs instantly, and months later they're listed again. For me it happened in four years,” explains the 17-year-old Cinema Studies student at the University of Toronto. (Read about the University's donor registration campaign.)

Arbow was just 10 weeks old when she was diagnosed with cystic fibrosis, a genetic disease that causes thick mucous to build in the lungs and digestive system. The condition leads to severe difficulty with breathing, as well as problems with digestion and nutrient absorption.

Managing the disease meant Arbow had to undergo physiotherapy twice a day to clear her lungs.  She also spent a couple of weeks in hospital every two years for intravenous antibiotics and more rigorous physiotherapy. When she was12, she needed more frequent interventions. Her care team referred her to the Hospital for Sick Children for a possible lung transplant, then added her to the wait list.

In March 2009, Arbow and her mother moved from their New Brunswick home to Toronto, to be closer to the hospital for what became a five-month wait for an organ. For the first three months, Arbow and her mother, Judith, kept busy, exploring various parts of the city. But Elspeth’s health declined and she had to be admitted to hospital to continue waiting for an organ donor. 

“We tried not to be depressed by the wait,” says Judith. “It was the last six or eight weeks where she got really sick with her breathing that were the most stressful. And then our miracle happened, the lungs came in when she had a day or two left to live. It was beautiful, and we’ll forever be grateful to the donor family.”

Doctors had just moved Arbow, who was 13 at the time, into the intensive care unit and were preparing to put her on a breathing machine. That night, a set of lungs became available and she received her transplant.

The road to recovery wasn’t easy. There were complications during the operation, and doctors put Arbow on life support before she gradually recovered.

She spent about a month at Sick Kids following her surgery, healing, retraining her muscles and building strength.

“Without the transplant, I definitely wouldn't have made it past middle school, and here I am in my first year of university,” she says.

While she recovered, she developed the passion for movies that led her to U of T.

A group of people, including family, friends, and some hospital staff, arranged for her to receive free tickets to a film premiere at the Toronto International Film Festival (TIFF). She attended that screening, as well as several others in following years.

“I'm obsessed with TIFF, and now that I live here, I can go every year, and I want to volunteer next year,” says Arbow. “I guess the whole transplant thing put me in this direction.”

Highly motivated, Arbow is excited about life beyond her next operation. She hopes to become a film festival programmer, and to resume ballet classes — a hobby she began after her first transplant.

“It’s nothing short of a miracle,” says Judith. “With cystic fibrosis, she didn’t have the stamina or the lung capacity for any hugely physical activities. She always did as much as she could, but once she got the transplant, she really took off. She started doing some of the things she had been missing out on. And ballet was top of her list.”

Arbow is deeply thankful to her donor for her transplanted lungs, and hopes more will people will be inspired to register themselves as donors.

“If you had told me at the time of my first transplant that I'd need another one in four years, I would have said, 'No, no deal, don't want to do it,'” she says. “But having seen four years of extra life, I wouldn't deny myself because I've had all these experiences that I otherwise wouldn't have had.”

To register as a donor, visit https://beadonor.ca/uoft.