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living with pulmonary fibrosis: 'you need to be active and keep pushing back'
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laurie arkinstall with her granddaughter luna. laurie was diagnosed with pulmonary fibrosis six years ago and underwent a second lung transplant in 2025.
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laurie arkinstall is heading home to dunvegan, a small community in rural eastern ontario with a pioneer village and farm fields. she and her husband, andrew, live on their family farm where they grow crops like beans and corn. it’s also home to their “big fluffy golden retriever.” this is a milestone step forward in terms of her health that she doesn’t take lightly. “i can’t wait to spend more time with my granddaughter. i’ve basically missed her first year,” she explains of the close-knit family and little luna.
laurie was diagnosed with pulmonary fibrosis in 2019, a lung disease that happens when lung tissue becomes damaged and scarred. lungs need to be elastic so they can do their job, but when the tissue is thickened and stiff from scarring, breathing is difficult. shortness of breath, slowing down and fatigue are symptoms that impact daily life. some people stay stable for a long time with a healthy lifestyle and medication, but the condition gets worse much faster in others.
after a second lung transplant in june 2025, she had to stay close to the hospital in toronto because her body rejected the first lung transplant she received a year ago. this time around she stabilized, but then ended up with pneumonia over the summer and on oxygen support. now she’s much improved, no longer using oxygen or a walker. it could be a new lease on life.
laurie is 56 and thankful she got clearance from her medical team to attend her son’s recent wedding. her determination—her husband calls it stubbornness—is holding steady.
“you cross one bridge as you come to it, and you just keep going. keep plugging away. don’t give up. that’s my message,” she says of managing chronic disease.
“i’ve had very severe asthma since my teenage years, so it’s easy to explain things away. i felt like my asthma was just getting worse,” she says of early signs that something wasn’t right. a referral to a respirologist for testing lung function and imaging led to a biopsy and her diagnosis when she was 49. now coming out the other side of her transplant, there are challenges ahead.
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“you’re trading one disease for another when you get right down to it because people with transplants end up diabetic. they end up with heart disease, kidney disease, liver disease. you’re on so many drugs. that being said, there are transplant patients who have lived for many years, so you have to live healthy and look after yourself.”
in some cases, doctors can determine a cause for pulmonary fibrosis, but most cases are idiopathic (they happen without cause). for laurie, pulmonary fibrosis runs in her family, passed down by genetics. her mom died of the disease, deteriorating quickly after her diagnosis at age 68, although her doctor prescribed puffers and told her she’d be fine.
“even the last three weeks, she was fine up moving around, walking, talking and participating albeit slower. but then her lung collapsed and within two weeks, she was gone. it was really hard.”
a family history of pulmonary fibrosis
laurie’s sister lives with pulmonary fibrosis and is managing quite well, but her older brother david phillips died from it when he was 56, months after his lung transplant in 2021. he never came out of the icu to go home to his own ontario family farm. the phillips’ family started the annual avonmore berry farm run for pulmonary fibrosis in his honour, raising more than $75,000 for the important work of the canadian pulmonary fibrosis foundation. laurie has walked for the event but wasn’t well enough to participate this year. but she’s sharing her story for pulmonary fibrosis awareness month in september.
“it’s life-altering,” she says of hearing the diagnosis. “i wasn’t terribly surprised because of my family, but you go through it thinking, ‘what am i going to do? how long am i going to live? and of course, in this era, we hit dr. google, and it’s the worst thing you can do for pulmonary fibrosis because it’s horrible.”
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her respirologist started her on medication, moving her into a clinical trial in 2020 for a new anti-fibrotic drug, nintedanib. she stayed on the medication for about nine months, but couldn’t handle the side effects. “it made me very dizzy and i couldn’t keep it down. others end up in the bathroom.”
to complicate matters, laurie also has gastroparesis, a condition where things take a long time to move through your gastric system, affecting her ability to metabolize medication. “so many people struggle with it, and a large number of people take it for a little while and just say, ‘i can’t take this anymore.’ i’m not sure whether it really did anything for me.”
living with pulmonary fibrosis as a caregiver
what would prove just as difficult after her disease progressed was the pressing need to find a group care home for her adult daughter, whom the couple had always cared for in their home. she has cerebral palsy and is legally blind, requires a feeding tube and round-the-clock care.
“when you’re getting older, that’s harder. and as i got sicker, i couldn’t do it,” laurie says. then she needed to be in toronto for the lung transplant and recovery. through a crisis admission, she was able to place her daughter in a group home where she’s now settled. “that was a really difficult thing for her dad and i to do. i think that was more difficult than facing a transplant, to be perfectly honest.”
as well, her son has the genetic marker for pulmonary fibrosis, which means he could develop it. her niece is in the same situation. “i was really sad, of course, and emotional when i was diagnosed. but boy, when you know that part of your genetics is passed onto your son and it could cause him to be in the same boat, that’s hard.”
making the most out of life despite pulmonary fibrosis
what she’s learned most is the importance of healthy habits for diet, portion size and regular exercise to stay in good physical shape. everything takes longer when you’re living with the disease and there is debilitating fatigue, but you have to keep exercising and push through it, laurie says. “i’m a bit of a bull when it comes to that. you keep moving and keep doing things. the worst thing you can do is think, ‘i’m tired. i’m just going to sit in my chair.’ you need to be active and keep pushing back on those lungs as best you can. the lungs are like any other muscle, if you don’t use it, you’re going to lose it.”
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clearly, she’s determined and grateful to have donors for the lung transplants. her lung function now is not ideal, but improving, and she’s giving it her best shot—out of necessity.
as she points out, there are no certainties: “enjoy life. don’t sit down and start wallowing. pick up a travel book and or google where you want to go and just go and enjoy life and enjoy your family. none of us knows what time we have left.”
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