James Reimer is fond of saying he went to Toronto for lungs and found love. His story could be considered one about health, or resilience, or family. But the Reimers think of it — mostly — as a love story.
James was born with the genetic disorder cystic fibrosis, which attacks mainly the lungs. Raised on Saltspring Island, he had what he calls an ideal childhood with all the fresh air, pets, bikes and Nintendo games he wanted. His parents, Kathy and Al, knew their son might not see his 18th birthday. His sister Laura Jane died of the same disorder in 1982 at the age of five.
But the Camosun College graduate and University of Victoria student, though weak, survived. It wasn’t until 2009 that a run-in with the H1N1 flu caused him to become oxygen-dependent and needing a double lung transplant.
Referred to Toronto to await new organs, James grew lonely and more sickly — at one point dropping to 90 pounds. He was not able to qualify for the transplant list. Despondent, he reached out through the dating website OKCupid for friendship.
“I just wanted to have good experiences before I died — meet friends and not be alone,” James said. He met a woman named Adena.
James showed up to his first date at Spadina Avenue and Bloor Street, carrying an oxygen tank in a backpack. Adena was prepared for sickness but not the spark between them.
“When I met James, we connected right away,” Adena said.
In downtown Toronto, the couple stepped in and out of bookstores, talking about their favourite poets and authors. At some point, James’s tank ran out of oxygen. He never told Adena.
“Something about the depth of our connection felt very right,” he said.
Whether coincidental or motivated by love, James began to regain weight and strength. It took 10 months to get back on the transplant list and about another nine months to receive a donor. During that time, James’s parents had exhausted their savings and his father, overwhelmed by the stress, had a massive stroke that has left him in a care home.
B.C.’s Medical Services Plan doesn’t pay for accommodation when patients must go to other provinces for medical services. The Reimers depended on community and online fundraising efforts.
The night before his scheduled surgery on May 12, 2011, James proposed to Adena. “We were just filled with so much hope for the future — our dreams — we couldn’t imagine letting that go,” he said.
James’s mother was heartened that her son found love. “We’re blessed by Adena and that she loved him and was willing to take this on.”
The surgery was a success and his recovery remarkable. He enjoyed a health he hadn’t experienced before. He celebrated his one-year “lungiversary” in May 2012.
“We had the illusion of health,” Adena said.
Dr. Ian Waters, medical director of the adult cystic fibrosis clinic for Island Health, said transplants offer improvement but not a cure.
Lungs, unlike most other organs, are exposed to outside air, germs and viruses. For that reason, lung transplants are more prone to infection and rejection. Even if not immediately rejected, they last only five to 10 years.
“There’s been very significant improvement, and we expect more to come, but these individuals are still living with very significant burdens on a day-to-day basis,” Waters said. “It doesn’t go away. You don’t have a day where [you] don’t need to do something to maintain their health.”
Each day, James takes 60 to 70 pills. He measures his temperature and how much air he takes in and exhales.
In addition to all those pills and medical devices, James has benefited, Waters said, from a supportive family, wife and community. “You simply can’t do it on your own.”
On their wedding night on July 2, 2012 — everything was perfect.
The next morning, however, the newlyweds awoke to find James’s lung capacity had plummeted by 35 per cent.
“It was devastating,” Adena said.
Still, the couple carried on, convinced “it was a blip” and that James would bounce back. But within six weeks of having returned to Victoria — in and out of Royal Jubilee and Vancouver General hospitals — he was diagnosed with bronchiolitis obliterans syndrome, a form of chronic rejection.
Three months after their wedding, James was down to 25 per cent of his overall lung capacity. A B.C. doctor advised him to return to Ontario immediately.
He was admitted to Toronto General Hospital through the emergency department on Christmas Day — and stayed seven months “living on the edge.”
James felt guilty. “I wanted to be a good husband, and I was dependent.”
By February 2013, he was moved to the intensive-care unit and was on a ventilator. He battled lung and blood infections.
“We didn’t think he was going to survive,” Adena said. “Then we both reached a point of acceptance. As long as we had each other, we’d get through it.”
Finally, James was put on an artificial lung. “I think that was the turning point,” he said. The prosthetic device allowed him to regain enough strength to qualify for another transplant.
His second double-lung transplant was performed in Toronto on May 29. Immediately, his body seemed to reject the lungs, and there were times when his wife and mother would once again discuss the possibility of his funeral.
“When the new lungs didn’t kick in, I thought that was it,” Kathy said. “There were one or two days I couldn’t go to the hospital. I couldn’t bear it.”
But James pulled through again.
“I am still shell-shocked,” Kathy said. “It was awful, and I don’t know how he lived though all that. I was convinced he wasn’t going to live, it was so bad, but he just kept going.
“I am so proud of my son,” Kathy said. “I would rather have my son with CF than any other child ever.”
Dr. Atul Humar, director of the multi-organ transplant program at University Health Network at Toronto General Hospital, said that facility does a few multiple organ transplants — mostly heart and lung or liver and kidney — each year. The scarcity of donor organs is the major factor.
Retransplants are more common but are also affected by the supply of organs.
Following a double lung transplant, about five per cent of adults will suffer a catastrophic surgical complication in the first few weeks.
Another 10 to 15 per cent will die within the first year from an infection-related complication, and 80 per cent will go on. By five years, 60 per cent will still be alive. It’s projected that soon, 50 per cent will make it to 10 years.
On Sept. 18, the couple returned to Saanich, where James’s parents had purchased a home for their son’s university years.
“I was weak as a baby lamb, but I was able to walk side by side with my wife and hold her hand,” James said.
Kathy said all she hopes for is that her son has a good life — “a great, happy life with his beautiful wife and that she gets through graduate school.”
Adena is staying home until James is able to look after himself. She has a guaranteed place held for her at the University of Victoria to take her master’s degree in educational psychology.
Adena said the couple lives life with awareness — realistic about James’s odds of survival.
“I went into this relationship with eyes wide open. We have always been honest with ourselves. Part of that means we’re even more grateful for every single day.”
Throughout, “we were forced to live one moment to the next,” said Adena. “Now we want to live that way.”
James Reimer cannot work but must exercise to reduce the mucus in his lungs and remain healthy. He hopes a local gym might offer him a membership or someone with new or used exercise equipment in good working order might donate it to him at: [email protected]
