When you talk with Charlotte L’Oste-Brown about the new lungs she’s eagerly awaiting, you lose count of the alarming things she says.
“When you’re first diagnosed, you’re not really considered for a transplant,” she says with characteristic frankness. “That doesn’t happen until you’re on your last breath. Right now I’m running the lungs I have right out.”
The miracle of lung transplants—or kidney and cornea—tends to obscure all the factors that bear on actually receiving a new organ and what has to happen after the transplant is finished. For the mind not familiar with medical technique and physiology, the idea of substituting a failed organ with a donated one is at once fantastic and commonplace. It’s hard to imagine but we hear about its success every day.
Transplants have only been successful since 1954 when the first kidney transplant succeeded between identical twins in the United States. Canada’s first successful kidney transplant was performed in Montreal and the second at St. Paul’s Hospital in Saskatoon, both in 1963. The first single-lung transplant took place in 1983, the first double-lung transplant in 1986, both in Toronto, Ontario. Saskatchewan researchers and physicians have played a significant role in transplant practice. But this is new medicine.
As with all medicine, everything begins with diagnosis. On June 8, 2003, Charlotte started having breathing problems. At the time she felt it was an issue with her environment. In September of the same year she was diagnosed with polymyositis, a chronic inflammatory disease of muscle tissue. In Charlotte’s case, the disease ultimately caused pulmonary fibrosis, a thickening of lung tissue that in most cases leads to organ failure.
“Seven out of 10 people die within 10 years of their first visit,” Charlotte says. “I’m at 13. My doctors in Saskatoon tell me I’m kind of the miracle.
“Ten years seemed like a long time off so I just lived my life. In 2008, the pulmonary fibrosis became prominent. By 2009 I had to quit curling because I couldn’t stay warm on the ice. Golfing was always something even the doctors told me I should keep doing. I kept doing anything my breathing would allow me to do. I did slow down. In 2010, I started carrying oxygen tanks with me.”
Charlotte has worked as the full time ad sales representative for Prairies North since 2008. Only by 2011 was anyone aware of the seriousness of her condition. Her dynamism in the world of sales and activity outside of work testified to her determination—and it beggared the imagination considering her illness.
Things took the most significant turn in the summer of 2014—the summer of high temperatures and an envelope of thick smoke from forest fires around Regina. Charlotte was hospitalized. On December 6, 2014, doctors started Charlotte on rigorous, ongoing testing to determine if transplant was possible. By November 2015, Charlotte was on an active transplant list.
If there was a sense of relief at the news it was quickly overshadowed by the new medical regimen.
“In February 2015, I started taking immunosuppressants for the illness,” says Charlotte. “ I hardly have an immune system now. When I get those new lungs, I won’t have one at all.”
That’s no small thing given that to be on the schedule for a transplant means waiting until an organ is available—which can take many months. “You live with caution,” Charlotte says, who now wears a scarf even in the hottest of weather to quickly cover her mouth should someone cough nearby. “My greatest enemy is infection.”
“It’s a lifestyle,” says Dr. Holly Mansell, pharmacist and assistant professor at the University of Saskatchewan’s College of Pharmacy and Nutrition. She researches solid organ transplantation, adverse effects of immunosuppression, medication adherence, patient education and inter-professional education. She has an expert perspective on everything Charlotte will face after she receives her new lungs.
“Patient adherence [to drug regimens etc.] is a whole field of research,” she says. “We look at side effects from drugs, behavior, and things that are intentional or non-intentional. Rejection is very complex. The organ itself and many other factors determine how much antirejection drugs are prescribed. Lungs require a lot. It’s a balancing act between overcoming rejection and risking infection or cancer or causing side effects like cardiovascular disease or diabetes.
That’s a very concise outline of what organ receivers have to start thinking about when they are scheduled for the surgery. “They are on a wait list for a long time,” says Dr. Mansell. “Our research team is trying to improve patient education so they can cope while they wait and after.”
Charlotte knew from the outset that she had to learn everything she could. “You have to understand how and what to ask doctors,” she says. “You only see them for a short time.”
One of the biggest surprises for Charlotte was how much money the lung transplant will cost her. Public health care will pay for the operation itself but there are many other costs. “You have to be in Edmonton for six weeks before the operation and three months after with a 24-hour caregiver,” she says. Edmonton is the nearest of Canada’s five transplant centres for Charlotte.
Fortunately, Charlotte has friends in this time of trouble. Family and friends gathered to hold a fundraising event last year to help cover those extra costs. “I have never been so proud to be part of my community,” she says.
Waiting for a pair of suitable lungs has not been easy, but it has convinced her of one thing: she will be a determined advocate for organ donation. “The biggest problem is that not enough people make arrangements to donate their organs,” she says. “Blood type and chest size have to be exact between donor and recipient. Right now, 80 percent of donated lungs are too diseased or damaged to be used. More people need to donate.”
“The biggest barrier that people needing organ transplants face,” agrees Dr. Mansell, “is available organs. In Saskatchewan, you still need family consent for your organs to be donated. Let your family know that you want to donate.”
“Every person who donates their organs has the potential to save eight people’s lives.” Charlotte says. “Donations are the key.”
Adults can indicate their desire to be an organ and tissue donor by placing a red "organ and tissue donor" sticker on their Saskatchewan health services card.
These stickers are included in each health services card package. A form that comes with the stickers encourages you to discuss your views on organ and tissue donation with your family, and requires both you and a family member to provide signed consent. It's important that someone in your family knows whether or not you want to be an organ and tissue donor, since the stickers themselves do not guarantee a donation - that decision is left to your next of kin.
If you need a sticker, call Saskatchewan Health at 306-655-5054.