Shilpa Raju could give a master class in adaptation.
She’s spent her 20s lurching from one medical crisis to another: cancer to double lung transplant to cancer again.
“I’ve learned to walk three times in my life and I’m not even 30,” says the upbeat epidemiologist.
“I think we have an amazing ability to adapt,” she says. “You keep doing it until you hit a threshold.”
Raju knows thresholds. They’ve been captured in a Toronto-shot documentary, with a goal of promoting dialogue about organ and tissue donation in the South Asian community and beyond.
After the Fall: A Breath of Life examines the experience of Raju and her single mother, whose hesitations about modern health care solutions stem from a lack of awareness. That’s often the case for Raju’s Indian community, where myths of organ transplants are passed around.
Raju’s medical journey began in 2007. She was 21, in her final year of an undergraduate degree in life sciences. She was accepted to do a master’s in public health in the U.K. when she was diagnosed with Hodgkin’s lymphoma.
She was successfully treated for the lymphoma, but gave up the overseas program as it began right after her chemo and radiation. Instead, she set her sights on a similar degree in Vancouver.
But before she could get there, she developed pulmonary fibrosis — a known side effect from the cancer treatment. It caused scarring on the lungs and a steady decline in pulmonary function.
Unable to fly because of it, Raju took the train from Toronto to Vancouver. After she finished the Vancouver program, the fibrosis got much worse and life became increasingly compromised.
“You adapt to it,” Raju recalls. “I was trying to maintain my life the way I thought it should be. It got to the point that just walking from my bedroom to the bathroom was exhausting.”
Raju was told she’d need a double lung transplant, a solution that didn’t sit well with her mother.
“My mom found it so difficult because she had seen me go through cancer,” Raju recalls. “She understood that the reason I needed the transplant was because I had been treated for something else. For her it was very scary.”
The transplant prospect caused a cultural clash, with Raju’s mother getting her support through her Hindu temple community. “Her faith was so strong she thought I’d just get better and wouldn’t need a transplant,” Raju says.
Hamid Slimi is an Imam who also works at teaching the Muslim community about religiosity and transplant. He believes low donor rates are more of a cultural than religious issue.
“With education and common sense, people understand if it’s OK to take an organ, it’s OK to donate,” he says.
After four false alarms, Raju got new lungs in November 2012.
And indeed, her mother’s worst fears came true, when a year later Raju was diagnosed with a form of cancer called Post Transplant Lymphoproliferative Disorder (PTLD). She spent another four months hospitalized, with numerous setbacks.
But she made it. Now in good health, Raju embraces life fully. She just celebrated her 29th birthday by going out dancing with her friends, with no restrictions.
“I’m so insanely lucky to be alive,” she says. “When (my mom) sees the quality of life I have now and how happy I am, she completely understands why it’s a good thing it happened.”
Her experiences prompted Raju to promote dialogue about transplant awareness in her South Asian community and beyond. “These discussions are not open in most communities,” Raju says.
On board to raise awareness is Fatima Baig, a Pakistan-born Toronto resident who recently received her second liver transplant.
“Lots of people are worried that their religion doesn’t permit (donation). A lot of people are worried that they’re not going to be handled respectfully,” she says. “But that’s not true at all.”
The film is directed by Rose D’souza and produced by Pam Sethi, friends of Raju’s who witnessed her experiencing one complication after another.
“This is a story Pam and I felt is important to share, especially for ethnic communities in Toronto where transplant awareness is low and many myths persist,” D’souza says.