By Tanya Alexander
With thoughts of his daughter, Michael Arbow recently climbed to the peak of Africa’s Kilimanjaro – the highest free-standing mountain in the world – to bring awareness to the importance of organ donation. While ascending the last few kilometres to the top, some 19,341 feet above sea level, he had the opportunity to experience life from his daughter’s perspective.
“It was a struggle to breathe at the high altitudes – the air at the top is about 50 per cent of what you’re breathing right now,” said Arbow, “and people with cystic fibrosis (CF) live like that every day. My daughter had to live like that every day. I only had to do it for one and I can testify as to how difficult that was.”
CF is the most common fatal genetic disease affecting Canadian children and young adults today. There is no cure. Michael’s daughter Elspeth was diagnosed with CF when she was 10 weeks old and lived a life reliant on physiotherapy and medical treatments while growing up in Saint John, New Brunswick.
The lungs are the most commonly affected organ in patients with CF. They are prone to frequent lung infections can have a chronic cough, phlegm production, shortness of breath, chest tightness, sinus problems and occasionally cough up blood. Eventually, the body can build up a resistance to the antibiotics and wear and tear on the lungs creates scar tissue and hinders the flow of oxygen.
Elspeth was still an active child but by the time she was 12, her lungs were being overtaken by the progressive disease. She was placed on the Canadian lung transplant list and moved with her mom to Toronto to be closer to the transplant unit at Toronto General.
“It was pretty dire,” Elspeth shares. “I was at 25 per cent lung capacity for a long time.”
Her lung capacity then dropped to 20 per cent and she was admitted to ICU. Elspeth was in grave danger and needed new lungs to survive. Then miraculously they were there.
“Sadly for someone, a person died” says Michael, “but they donated everything – kidneys, liver, eyes – and his lungs were given to Elspeth. They say a donor can save up to eight lives.”
The recovery was intense – she was on a breathing machine for two weeks to help her new lungs work and to allow time for her body to adjust – but within two months, Elspeth was up and around, breathing better than she ever had in her life, at 85 per cent capacity.
“It added another four years to my life that I wouldn’t have had otherwise,” says Elspeth in the film “Dear Donor” created by students of the University of Toronto (U of T) Medical Society and the Interprofessional Healthcare Students' Association. The film stars real Torontonians, including many U of T students, whose lives have been touched by organ donation.
At 17 years old and living life to its fullest, Elspeth enrolled this past September as an undergraduate in U of T’s Cinema Studies program. In December, she and a group of organizers at the university planned a donor registration campaign with a goal of reaching 4,000 people. It became the largest institutional organ donor registration campaign in Ontario’s history.
“Over the 12 days in January we had over 82,000 people come by our booths – undergrad, grad and PhD students and faculty as well,” says Elspeth. There are so many international students – people from all over the world. We were only registering Ontario residents (she explains that organ donation is done on a provincial level, though receiving organs is on a national level). But we engaged so many people, I’m sure it will make a difference for other provinces and countries.”
The campaign surpassed its goal and registered nearly 5,000 people for organ donation. This is substantial when considering that five Canadians die each week because the organ donation that could save their lives is not available.
According to a national campaign The Donation Project (donationproject.ca), 95 per cent of Canadians claim to support organ and tissue donation, but only 35 per cent are committed donors. They say this is because Canadians are not aware that organ and tissue donation can save thousands of lives and do not know how to become donors. That’s why these campaigns are vital. And this is why Michael scaled a mountain.
Michael is currently living in the Middle East State of Qatar, where he is working with College of the North Atlantic-Qatar (CNA-Q). So inspired by his daughter, he solicited Hamad Medical Corporation and Qatar’s Organ Donation Centre, along with fellow colleagues, to help him create the campaign Breathless No More as a way to get the message out to a wider audience.
“Interestingly, I approached Greg Springall who teaches marketing at CNA-Q, who then invited me into his advertising class for a brain storming session with his students on a tag line. ‘Breathless No More’ was the result,” says Michael.
“So this is our own personal campaign, although I have posted pics/videos from other similar campaigns to raise organ donation awareness. In particular I have been highlighting my daughter’s work at the University of Toronto. She’s doing such great work!”
The Breathless campaign continues with CNA-Q and Hamad community outreach to increase awareness of the Qatar Organ Donation Centre and encourage people to sign as donors.
And the story continues for Elspeth. As is the natural progression for transplanted lungs, they are slowly deteriorating. A steady decline began in June of 2013 and they are currently at a capacity of 30 per cent.
“But it’s better now at 30 per cent with healthy lungs than it ever was before – technically the new lungs don’t have Cystic Fibrosis,” she says. “Even though I’m in a decline, I’m not sick. It’s more because they’re worn out. But I will need another transplant in the near future.”
Elspeth is still active and hopes to complete a Master’s degree after finishing her four-year undergraduate program. It may take an organ donor to help her do that.
Please register. You may save the life of Michael’s daughter. Or your very own.
For more information on organ donation and to register in your province, please see:
The Organ Procurement Exchange of NL: http://www.easternhealth.ca/Give.aspx?d=1&id=323&p=53