Hope and worry: finally in queue for lung transplant

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This article was published 04/02/2023 (1296 days ago), so information in it may no longer be current.

‘A race against time.”

That’s how Rick Schmidt feels now that he has officially been put on the list for a lung transplant through the Manitoba Lung Transplant Program.

“It’s now a race to see if my health can hold out long enough to get the transplant,” he said.

Schmidt, 67, was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2018, a type of lung disease where scar tissue forms in the lungs and leads to difficulty breathing. Drugs can slow its progress, but there is no cure. The only hope is a transplant.

After a series of tests in June, last year, the retired mediator and conflict-resolution instructor was told he qualified for a transplant. But he wasn’t put on the list to get one — he was still too healthy, compared to others who needed the life-saving surgery.

“They said I was doing too well,” said Schmidt, recalling that conversation. “It was disappointing, but a bit of a backhanded compliment at the same time.”

Although not sick enough to get on the list, he was doing poorly enough to need supplemental oxygen for things like cutting the grass, vacuuming or a walk.

He had another series of lung function tests in November. “I did disappointingly well,” he said of again failing to be sick enough to make the list.

But by early December, his health began to rapidly decline. “I started to need oxygen all the time, not just for exertion,” he said.

After contacting the Manitoba lung-transplant team to explain his new situation, they agreed it was time. After waiting a few weeks to get some dental surgery done and a minor infection cleared up, on Jan. 17 he got the news he was on the list for a transplant.

While Part 1 of his waiting is over, “Now comes Part 2, this time waiting for a donor lung to become available,” Schmidt said, noting it could happen in six months, a year — or tomorrow.

It will be a challenge. “It feels like my life has shrunk to the size of a shoe box,” he said, adding, “I have a limited amount of energy for each day. Each morning I have to decide what one thing I can do that day.”

To keep him safe from getting a cold, infection or — worst-case scenario — COVID-19, Schmidt and his wife, Sara Jane, have established a rigid set of protocols to limit their interactions with the outside world.

“COVID is a real showstopper,” said Schmidt.

When the call comes, they will immediately head to the airport where an air ambulance will take them to Edmonton for the transplant surgery.

“We’ve got drivers all lined up and a list for the things we need to prepare and do,” Sara Jane said, adding they expect he will be in hospital there for three to four weeks.

Nancy Porhownik directs the Manitoba Lung Transplant Program. For her, working with people like Schmidt is a blessing — but also hard.

“We get to know these people really well,” she said, noting her job description includes offering emotional, psychological and spiritual support to patients as they await a call.

“We keep checking in on them, monitoring their health status, offering encouragement,” she said.

While feeling blessed to walk with patients, Porhownik also finds it hard because it can take so long for lungs to become available — patients worry they won’t be able to make it before the disease renders them too frail for the surgery.

“We try to keep them motivated and hopeful, but also realistic,” she said. “That’s a tight line to walk.”

One reason for the long wait time is the shortage of lungs for transplantation, partly because not enough Canadians sign up to be organ donors.

But lungs are also easily damaged in something like a car accident, owing to chest trauma. And there is also the matter of finding the right match for size and blood type for recipients.

For Porhownik, that means helping people like Schmidt, and the 12 other Manitobans currently on the lung transplant list, keep their spirits up while they wait.

“We keep checking in with them, telling them to keep moving, to keep themselves as healthy as they can,” she said. “We know they are looking to us for support and encouragement.”

As for Schmidt, he appreciates the support he gets from Porhownik and the entire lung-transplant team.

“I’m thankful for them, for friends and for the support we are receiving in what now feels like a very small life,” he said.

That includes the care and friendship the couple receives from their home faith community, River East Church.

“Many people have offered to help in any practical way they can or make themselves available for the kind of support we need,” he said. “We know that we can count on them. We are not alone. That makes our journey through this difficult, uncharted territory easier to bear.”

To become an organ donor, visit www.signupforlife.ca.

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