A year ago, Don Harloff couldn’t walk from his car to his office without fighting for air, even with the help of an oxygen tank. Showering, getting dressed – doing anything was a struggle.
His breathing problems developed gradually. At first he was puffing after skating up and down the ice at hockey; then he was breathing hard on the golf course. Soon it was clear the problem was more than just being out of shape.
After a battery of tests, Harloff was diagnosed with scleroderma. Most types of the disease cause hardening of the skin; in Harloff’s case, it was the cells in his lungs that were losing elasticity. As his lungs lost capacity, it put extra strain on his heart and he developed pulmonary hypertension.
In July 2007, he started using oxygen for any physical activity, and by January he was using it almost all the time. He went from sitting on the couch at home to sitting at his desk at work.
“Without a large amount of oxygen, I couldn’t walk upstairs,” Harloff said.
The change in Harloff today is incredible; he can walk freely without gasping for breath or using oxygen. He’s the recipient of a medical miracle: a double lung transplant.
Harloff struggles to find the words to describe what the transplant has meant to him.
“It was amazing, it’s a new life – it’s a new lease on life. I don’t know how to say it other than that. It was an absolute miracle.”
The executive director of Woolwich Community Services, Harloff is one of 62 people in Ontario who received a lung transplant last year.
To be a candidate for organ transplant, a patient has to be both sick enough to need one and healthy enough to go through with it. Harloff was first considered for a transplant in April 2008. After putting him through a series of tests, doctors at Toronto General Hospital concluded he wasn’t sick enough.
Harloff knew better and so did the staff at Freeport Hospital in Kitchener, where he went for pulmonary rehabilitation twice a week. They saw how rapidly his health was deteriorating, and how he was using more and more oxygen to do the same things. They persuaded Toronto General to take a closer look at his case, and Harloff went on the transplant list in May 2008.
For the next two months, Harloff wore a beeper everywhere he went. When he got the call at 11 p.m. on July 18, he grabbed the bag he kept packed at all times and headed to Toronto with his family.
They got to the hospital at 2 a.m.; at 6, Harloff was wheeled into the operating room. Ten hours later, he was wheeled out with a new set of lungs.
Harloff doesn’t know anything about who the donor was, only that they were the same size and blood type as him. He was able to write a letter to the donor’s family, thanking them for their gift and offering his condolences for their loss. If they choose, the family can get in touch after a year passes, so he may still get the chance to thank them in person.
Harloff said the operation was tougher on Kathryn, his wife of 28 years, and his two sons than it was on him.
“They were up all night during the surgery wondering if I was going to make it. They were constantly with me while I was recovering and seeing me with tubes stuck everywhere and machines all around me. They had to see all that.”
Harloff was heavily sedated for the first week, and unaware of what was going on. By the second week the meds were wearing off and things were clearer, and by the third week he was discharged from the hospital.
For the next month, Harloff had to make daily visits to the hospital, so the family rented a condo three blocks away.
“I walked to the hospital every day; it was an amazing turnaround. Three weeks earlier, without an extreme amount of oxygen, I couldn’t have walked three blocks.”
Nine months later, Harloff was back to work part time. He will take a cocktail of anti-rejection drugs for the rest of his life, but otherwise there’s no outward sign he was ever sick.
Harloff is one of the lucky ones. Not only did his recovery go smoothly, with no rejection or infection, but he was on the waiting list only two months before an organ became available.
Nearly 1,700 Ontarians and more than 4,000 people across Canada are currently waiting for organs. Last year 303 Canadians died while waiting for a transplant.
The number of transplants has increased over the past decade, but most of that increase has come from living kidney and liver donors. In Ontario, the number of people waiting for a transplant peaked in the early part of this decade but hasn’t changed significantly over the past 10 years.
Bree Cordick is one of those still waiting. The 23-year-old is an anthropology student at the University of Guelph. She should have graduated last week alongside her friends, but she’s been on a medical leave of absence for the last year.
Cordick has bronchiectasis, a disease that stretches and damages her airways. The stretched airways form pockets that collect germs, dust and mucous, causing infections. Cordick takes about 10 different medications to open her airways and loosen the mucous in her lungs, and antibiotics to reduce the risk of infection.
Cordick was born with bad lungs, but when she was younger she could play soccer and dance. Now, pulling on her socks is an effort. Her lung function peaked at 80 per cent of what it should be; these days, it has deteriorated to 20 per cent.
Diagnosed at 17, Cordick found it tough to accept that she wasn’t going to get better. Meeting other people with lung disease at Freeport Hospital and Toronto General, where she does pulmonary rehab, has helped her come to terms with it.
At Freeport’s pulmonary rehab clinic, oxygen tanks are towed around like suitcases at an airport. There are roughly 70 patients, most of them with chronic obstructive pulmonary disease (COPD). Some, like Bree, are waiting for a transplant; a few are post-operative, doing mandatory exercise under supervision.
The patients have become an informal support group for each other, a community of people who understand what someone’s going through without being told.
“You can’t really explain how you feel to healthy people,” Cordick said. “With those people, you don’t need to say anything, they just get it.”
Cordick says the social networking website Facebook has also been a good resource for connecting with others, especially people her own age. The disease most closely related to hers is cystic fibrosis, and she has a number of friends with CF at Toronto General. But in a cruel twist, they have to stay at least three feet away from each other, because of the risk of cross-infection. So Facebook is one way they can keep in touch.
Cordick has been on the transplant list for 13 months. She had one false alarm last September; she rushed off to Toronto but was turned back in Milton because the donor had deteriorated too fast.
Cordick was bumped up the list last month after she was hospitalized and CT scans showed her disease was progressing. Finding a size match is the tough part; she’s petite, about five feet tall, so lungs will likely have to come from a child.
“You don’t want to hope for that,” Cordick said.
In Ontario, organ donations and transplants are coordinated by the Trillium Gift of Life Network. After matching for size and blood type, donated organs go to the person who needs them the most.
Canada lags behind other developed countries when it comes to organ donation. In 2006, the Canadian Medical Association Journal reported that Canada’s donation rate was 12.8 donors per million, compared to 35.1 per million in Spain and 21.5 per million in the U.S.
One suggestion for increasing donations is switching to a system of presumed consent like that used in Singapore, Spain and a number of other European countries. Under presumed consent, people are assumed to be organ donors unless they opt out. NDP MPP Peter Kormos has introduced presumed consent bills three times in the Ontario legislature, most recently last fall. The bill has never passed.
Facing low public support for presumed consent, the Trillium Gift of Life Network has focused on increasing awareness of the need for organ donation. Trillium runs a high-profile ad campaign encouraging people to not only sign their organ donor cards, but to make sure their families are aware of their wishes, because the family has the final say on whether organs are donated. Trillium also encourages people to register their intent to donate their organs with the Ontario Ministry of Health.
Versha Prakash, vice-president of operations at Trillium, said a high percentage Ontarians say they support organ donation, but only 16 per cent of adult Ontarians have registered their consent to donate through the Ministry of Health database.
“Every three days, a person dies while waiting for an organ donation,” she said. “Our message to the public is please register your consent to donate and talk to your family about your donation wishes.”
Until organ donations increase, research is focused on making fuller use of organs that are available. As well as being one of the premier transplant facilities in the world, Toronto General Hospital is a leader in organ research.
Last December, 56-year-old Andy Dykstra was the first person to receive a set of lungs that did not meet transplant criteria. After being harvested from the donor, the lungs were transferred to a bubble-like chamber where they were pumped with a bloodless solution of oxygen, proteins and nutrients.
Lungs are easily injured and currently only about 15 to 20 per cent of donor lungs are acceptable for transplant; using this new lung perfusion system, those numbers could be doubled.
Don Harloff is eager to see the results of the research pay off for his friends still on the waiting list at Freeport. While he’s happy for himself and knows they’re happy for him, that joy is mingled with a bit of guilt.
“I try as best I can to keep their spirits up and to try and make sure they maintain hope that there will be a call. Do I feel guilty? Yes. I want them to be better, I want them to experience what I’ve been able to experience.”
Lori O’Donnell, physiotherapist at Freeport’s pulmonary rehab clinic, said stories like Harloff’s provide a tremendous boost to the other patients.
“The lift in a place like this is amazing,” she said. “The day Bree gets her transplant, the people here are going to go crazy.”
O’Donnell was lucky enough to work with the first double lung transplant recipient at Toronto General, and 23 years later, she still marvels at the transformation in her patients.
“It truly is a miracle,” she said. “Sometimes that word gets misused, but it truly is a medical miracle.”
For Cordick, a transplant would mean the chance to really live a life that has been put on hold by her disease.
She wants to get back to school and someday travel to the foreign countries she’s read about. In the future, she’d like to put some of her experiences to use counseling young people in hospitals or volunteering with Trillium to raise awareness. Mostly she’d like to be able to live without planning around her disease.
“Just to be able to get out and walk around would be nice. You don’t really focus on the big things like going abroad; just being able to do simple things without having to catch your breath or slow down.
“There’s so much I want to do – just go out and live my life.”
