PTLD Stories of Strength
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Allison, PTLD Advocate
Nova Scotia, Canada
Living with cystic fibrosis
Double lung transplant recipient
With my new lungs, I could walk up a flight of stairs without wheezing. I could breathe.
The air is crisp on an overcast afternoon in New Brunswick, Canada. A winter’s worth of accumulated snow is packed underfoot as Allison strolls across the field of her neighbor’s farm. Her radiant smile and pink cheeks are a testament to her current good health. She exhales an effortless breath; the moisture hangs visibly in the winter air—a seemingly simple act, but one that has been nearly impossible to do for much of her adult life. Allison turns her face toward the wind and declares with deep satisfaction, “I can breathe.”
Allison was born with cystic fibrosis (CF), a condition she shares with her older sister, Amy. CF is a genetically inherited disease in which the body produces thick and sticky mucus that clogs the lungs, causing breathing difficulties, and obstructs the pancreas, leading to digestive issues. The disease is progressive and fatal. People with CF have a shortened lifespan, typically dying in their 30s and 40s. A published author, Allison has written two memoirs, Wanderlust and Transplanted, that chronicle her experiences living with CF. However, the stories she weaves together are not solely about CF—they include stories of biking across Canada with 45% lung capacity, receiving a double-lung transplant, and surviving posttransplant lymphoproliferative disease (PTLD), a rare and aggressive cancer. In all cases, Allison has beaten the odds by staying alive. Her stories are a testament to her ability to maintain a zest for life, compassion for others, and a keen sense of humor while facing life’s darkest moments.
From birth, Allison’s health was in peril. Just minutes into life, her tiny body faced a life-threatening situation—an intestinal blockage required an invasive procedure to empty her bowels. “I was in and out of the hospital for the first five years of my life for severe digestive issues. I wasn’t able to absorb enough calories, nutrients, or vitamins,” she says. “I used to throw up after I ate.” Concerned with her lack of weight gain, her doctor inserted a jejunostomy tube (J-tube) when Allison was 18 months old. The feeding device remained in her small intestine until she was six. Maintaining weight has been a lifelong issue. As Allison writes humorously in her book, Wanderlust: “Most people feel guilty when they eat a piece of cake, I feel guilty if I don’t eat the piece of cake.”1
Creating a New Normal
Despite Allison and Amy’s constant lung infections and digestive problems, their parents took all three kids (Allison, Amy, and their younger brother, David) hiking and camping every summer. Their dad taught them baseball and soccer, never letting Allison or her sister’s disease become the defining factor in what they could or couldn’t do. When Allison turned 14, she was connected with the Make-a-Wish Foundation, through which she was given Sydney, her horse and companion to this day. “Horseback riding, carrying saddles, and shoveling horse poop kept me active throughout high school,” she says.
Allison’s small-town community became very aware of her and Amy’s diagnosis as their father became involved in CF Canada, the Canadian CF foundation, which connected their family with other affected families and held seasonal gatherings. “My dad was really into educating other kids at the school about our illness. He would get up in front of the entire school and explain about the disease and had me show everyone the aerosol mask I used daily to help clear my lungs.” Because of these lessons, there was no stigma at school concerning CF. Allison experienced fits of coughing up mucus, required daily aerosol treatments, and often needed to clap on her rib cage to loosen things up, but her peers understood and accepted that as her normal.
University proved more frustrating. With each year, Allison could feel her lung capacity and physical strength deteriorating. “It was a shock to me when what I thought I could do no longer matched my body’s ability. I was frustrated that I couldn’t keep up with everyone in intramural sports like ultimate frisbee. I still participated, but the frequent lung infections (3-4 a year) and the accumulating scar tissue in my lungs made physical activity a lot harder.”
After she graduated from university, Allison made an unexpected decision. “It was sort of on a whim,” she says, shaking her head and laughing, recalling her sheer boldness, “that I decided right after university to bike across Canada with my brother David.” When she and David were both home from school, he expressed disappointment that a friend, with whom he had planned a cross-country cycling expedition, had canceled. “I’ll go with you,” she had said, half-joking. But soon, they were discussing actual logistics. Allison convinced David that she could do it. The two spent the next six months mapping out where they would stay and what items they needed—a small camping stove, water, canned meat for protein, and, of course, Allison’s aerosol mask and medication. At the time, she was at around 40% lung function. She knew she would need a good night’s sleep after each day’s ride. “Rather than camp each night, as David had planned with his friend, we decided to turn the ride into a fundraiser for cystic fibrosis, hoping that the cause would inspire people to host us. People across Canada signed up.” During the ride, the host families nourished Allison and David with homemade food, freshly made beds, and good conversation. After days of teetering on the brink of exhaustion––whether it be biking over the seemingly endless hills of the countryside or navigating the loud, busy streets of cities––Allison says it was the families who bolstered their spirits and helped them push toward their goal.
I didn’t have full confidence that the transplant would even help. But when I started seeing how it changed other people’s lives, I started getting hopeful, dreaming of all the things I would do once I got my lungs: hike, run, bike, travel, jump, walk up a flight of stairs without getting winded, swim.
The Gift of Life
Throughout her 20s, her health kept deteriorating. In a short period of time, she got pneumonia twice and her lung function fell to a dangerous 28% capacity. “I felt like this was it. I was dying,” she says. “I could barely move.” There was one option to extend her life, something her parents had talked about many times: a double-lung transplant. It was a risky prospect and would require Allison to move away from her rural town, likely for years, to be in Toronto—a city with top-notch medical facilities, including a transplant clinic. “I wondered hard whether or not that was how I wanted to spend the possible last years of my life.” Adding to the weight of the decision was knowing that double-lung transplants are not an absolute cure—only 80% of people survive through their first-year posttransplant, and the percentage goes down each following year. She writes in Transplanted, “I didn’t have full confidence that the transplant would even help. But when I started seeing how it changed other people’s lives, I started getting hopeful, dreaming of all the things I would do once I got my lungs: hike, run, bike, travel, jump, walk up a flight of stairs without getting winded, swim.”2
Allison decided to pursue tests that would determine her eligibility for the transplant list. She and her partner, Isaiah, moved from their small community of Springhill to Toronto together. “Isaiah was a rock,” Allison says. “He helped me physically and emotionally and never panicked about anything.” After 13 months of living in Toronto, Allison’s health took a severe turn for the worse. She was hospitalized in the respiratory wing of St. Michael’s Hospital, her breathing strained and painful. Her family felt unsure if she was going to live beyond a few more days. She was told that if donated lungs didn’t arrive in the next day or two, she would need to be put on a ventilator. One night, two nurses came to her room and giddily announced that she had gotten “The Call,” meaning a pair of donated lungs had become available. The lungs were not a perfect fit—they were too large for her chest— but doctors felt Allison was running out of time. The surgeon carefully cut and reshaped the lungs, a risky procedure that could permanently damage the lungs before transplanting them into Allison. Everyone prayed her body would accept them.
Recovery was intense—learning to breathe with new lungs gave Allison daily panic attacks. Her breathing felt unnatural, as if she were gasping for air. On top of that, she developed an infection in the incision site that required additional surgery. This left an open wound in her chest that took months to heal. But with excellent medical care, perseverance, and a bit of luck, Allison slowly adjusted to her new lungs, breath by breath. After months of struggle, she returned to health.
I knew the complication could occur, but I was angry. I was supposed to be on a beach. And I had already gone through so much.
After almost two years in Toronto, it felt like a miracle when she and Isaiah returned to Springhill. “I wanted so badly to be back in society visiting with my friends and family,” she says. A sense of normalcy returned to their lives, but only temporarily. Just when they were about to celebrate the one-year anniversary of her transplant with a family trip to Aruba, Allison got bad news—her hemoglobin levels were dropping, indicating the possibility of PTLD, a rare form of cancer that can follow transplants. A PET scan revealed cancer spots covering her lungs and kidneys. She was diagnosed with diffuse large B-cell lymphoma. She needed intense and immediate chemotherapy treatment. “I knew the complication could occur, but I was angry. I was supposed to be on a beach. And I had already gone through so much.”
Recovery and the Road Ahead
Following six cycles of chemotherapy, the doctors saw progress in shrinking the tumors. After eight cycles, she was cancer-free and given yet another lease on life. “I took a job working at a library once a week. It was just the right pace to reenter the workforce.” As she steadily gained strength, Allison was ready for a new challenge, and she took a more robust job at a university library. She and Isaiah decided it was time to pursue some of their dreams—they bought their first house and set aside time to travel to Hawaii and Europe. Before they knew it, five years had passed and Allison’s lungs were still functioning. “My family and friends threw me a five-year “lungiversary” party,” she says. “It was a huge milestone. Only 50% of transplantees make it to the five-year mark.” At the party, Allison looked around at the beaming faces of those who had supported her over the years and a wave of gratitude swept through her. “With my new lungs, I could breathe in cold air without my lungs seizing. I could walk up a flight of stairs without wheezing. I could sleep without needing three pillows to prop me up. I could laugh without having a coughing fit. I could breathe.”
With my new lungs, I could breathe in cold air without my lungs seizing. I could walk up a flight of stairs without wheezing. I could sleep without needing three pillows to prop me up. I could laugh without having a coughing fit. I could breathe.
After all she has endured, Allison now empathizes as her sister’s lung capacity declines close to where hers had been at the time of her transplant. With Amy’s deteriorating health, they can no longer hike long distances or ride horseback into the evening—beloved pastimes the two once shared. Instead, the sisters have found new ways to enjoy the serenity of the countryside that surrounds them. “I got us cameras,” Amy says. “So now, we go out at night and make our own adventures photographing the stars.” In the cool of night, they walk into the darkness together, camera and tripod in hand. The sky above reads like an open book, full of constellations corresponding to mythic tales and characters immortalized in starlight. As they carefully focus their lens on the dark expanse overhead, Allison and Amy maintain a gentle silence. Carefully they release the shutter and remain still, observing the passing of time. Twenty seconds go by before the shutter closes. As it does, they each let out a breath. It’s cold and the moisture from their combined exhalation hangs in the night air, suspended for a while before dissipating. They smile, knowing that nothing outside of the present moment is promised, and together they marvel at the beauty surrounding them.
2Watson, Allison. Transplanted. Nimbus Publishing: 2019.