James Reimer remembers the endless hum of his artificial lung machine, the constant presence of his wife, Adena, and a fire inside that kept him fighting death for six months in Toronto General Hospital’s intensive care unit.
Every breath James took in those days of early 2013 was a battle against a foe he had been fighting since birth, one that only two years prior had destroyed one lung and had claimed victory over the other.
“The fact I’m alive right now is a miracle after what I went through. There was so much that went wrong,” says James, standing cheerfully in the courtyard of his Mt. Tolmie neighbourhood home.
Today, you’d never know James has cystic fibrosis and two foreign lungs, save for the T-shirt he proudly displays trumpeting this fact (a gift from Adena).
James’ older sister was also diagnosed at birth with CF, a genetic disease that mainly attacks the digestive system and lungs. She died before her fourth birthday.
After his first lung transplant in 2011, James was doing well, newly married and back in Greater Victoria. Nearing the two-year anniversary, his lung capacity dropped 30 per cent overnight and he was rushed back to Toronto General, where the country’s transplant team could then re-evaluate his condition.
“When I went over, I had to jump through all sorts of hoops to show I was committed to (getting another transplant). I had to gain weight, fight off bugs. After a year of trying to get on the list, I made it on.”
The second transplant was an even more difficult experience. James had been recently married, and his lung function suddenly dropped 30 per cent overnight. He consulted with a Vancouver transplant team, but because he was still within a year of his first transplant, he had to go back to that province to get on the transplant list.
“You have to bring a zillion pills with you everywhere you go,” says James, sweeping plastic drug containers to one corner of his living room table. “I still have a tupperware full of medications, like anti-rejection drugs to keep the lungs in my body.”
About one in 25 Canadians carry an abnormal version of the gene responsible for CF and while many don’t manifest symptoms, there remains a 50 per cent chance that two carriers will pass on those genes to their children, and a one in four chance that two carriers will have a child with cystic fibrosis.
A 2014 study published in the European Respiratory Journal based on numbers from Canada’s CF registry shows life has improved drastically for CF patients over the past generation. The median age of survival has surpassed 50, up from just 32 in 1990, putting Canadian CF patients at one of the highest survival rates in the world.
James, now in his early 30s, is nearing the two-year anniversary of his second lung transplant. He believes he broke a medical record by surviving for three months using the Extracorporeal Membrane Oxygenation (ECMO) system while on the transplant wait list for the second time. The artificial lung machine oxygenates the blood and can also act as an artificial heart.
“I broke all kinds of records on that thing,” James says. “Usually you only survive on ECMO for a few weeks.”
He remembers his childhood on a Saltspring Island farm as relatively normal, but admits parents sheltered him from group childhood activities and preschool on doctor’s advice to lessen the risk of catching viruses or other infections.
“I was always on antibiotics and I was always seeing doctors. That was always a part of my life,” he says. “That’s something everybody with CF is hyper-aware of. We have to be germophobes in some ways, but that leads to isolation from peers.”
Today, Adena remains grateful for each healthy day she has with James. Her memories of the tough years are still painful; she remembers saying goodbye to James more than once with his mother, Kathy.
“James and I tried very hard to remain hopeful (during our time waiting for transplants), but I lived with constant fear,” Adena says. “James’ mother and I started to make funeral arrangements. … We know that everything can change again overnight. Our lives still feel very precarious, but I am grateful for that, because it reminds us that our time together is precious, too.”
James is now fundraising for the local Great Strides Walk, a CF fundraising event taking place on May 31 at Clover Point. The money goes to CF research, which has indeed made great strides with advances in genetic medicine.
“We’re closer than ever to a cure to this disease, and it’s been amazing watching the technology and medicine get better,” James says.