from oxygen tanks to 10k walks: a journey to advocacy through cancer, lung and kidney transplants
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"i wouldn't be here without the kindness and generosity of organ donors, the support of family and friends, and the amazing care i'm fortunate to have received and continue to receive across uhn," says shilpa raju, left.
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when shilpa raju was in the process of completing her last semester of undergraduate education, she was met with the first health scare of her life: hodgkin’s lymphoma. she went through chemotherapy and radiation to treat it, and she was out of the woods—or so she thought.
soon after her treatment had finished, shilpa began experiencing an increasingly worrisome shortness of breath. her lungs had been severely damaged by her cancer treatment, and as time went on, it worsened to the point of “needing oxygen 24/7 to do anything.”
she continued to live her life as normally as possible, studying for her master’s degree in public health and securing a job. she was forced to think about her oxygen intake all day, considering how much it’d take to walk a certain distance to work and whether she’d have enough in her tank to get through her workday.
“over time, those trade-offs as your condition progresses, it gets harder and harder to keep adapting. you can only do so much,” she said.
facing organ transplants with uncertainty
eventually, her condition got bad enough that she was put on the list to receive a double lung transplant because hers were too far gone to be saved. for a year, she received five separate calls saying that her new organs would be available, with only the fifth and final one being the real deal.
but during that waiting period, she faced an emotional toll of figuring out what her life was going to look like after the transplant, at the same time as attending pre-surgery physiotherapy to prepare her body for the ordeal.
“you go in … while you’re waiting to essentially maintain as much physical strength, muscle, whatever you can maintain, recognizing your body is going into a very complex surgery and that you don’t know … what’s going to happen with the recovery.”
after the procedure was done, shilpa notes that she had a “complicated recovery” and spent a month in the icu because she couldn’t walk, talk, or eat.
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“i didn’t start walking until weeks after because i just lost the ability to,” she said. “you don’t expect that. your brain doesn’t tell you that’s what’s going to happen, and when you feel it, it’s so jarring,” shilpa said of not being able to stand or walk on her own following the surgery.
once she was out of recovery, she was given immunosuppression medications to ensure that her lungs wouldn’t be rejected by her body, something that she still takes today. unfortunately, the side effects of that medication, as well as treatment for a bout of pneumonia, led to her needing another transplant. this time, it was her kidneys that had begun to fail her due to her medications.
she waited for a few years for the kidney transplant to come through while doing dialysis, with her husband becoming her donor in december of 2023.
“he was there through all of it (her illnesses), but i think once the kidney started failing and the dialysis piece, that’s when he really had to step up as a caregiver,” said shilpa.
together, shilpa and her husband had the operations, and afterwards, they had to recover together.
“we’ve both been through it. he donated his kidney. that is quite actually, in some ways, that recovery; they say it’s harder because for the healthy person having to adjust to one kidney less, they go back to being healthy, but it’s still an adjustment,” she said. “whereas, for me who’d been really compromised on that kidney front to then having a functioning kidney, it’s like, ‘oh, this is amazing.’”
the recovery went well for both of them, nothing like her first transplant, and by the following march, she and her husband were gearing up to participate in a 5k walk to honour their experience together and their wedding anniversary.
“it was just a way of celebrating that thing together,” she said.
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finding new hope through organized walks and advocacy
after she and her husband successfully completed the 5k, shilpa wanted to see more of what her body could do. she continued to push her body to its new limits, participating in more 5k and 10k walks.
because she went from being unable to do anything without oxygen and not being able to walk after her lung transplant, shilpa didn’t want to take her recovery for granted.
“i’m very lucky,” she said. “i’m happy to be living the life that i’m living.”
shilpa also advocates strongly for organ donation, which is a significant part of why she continues to participate in her fundraising walks. she has seen all possible scenarios that can occur when someone needs an organ transplant.
“i wanted to do something different to celebrate the fact that i’m still here,” she said. “i had friends who were waiting who never got their organs in time. i had friends who got their organs and had complications or passed away.”
a walk she is proud to be a part of, we walk uhnited, is the next on her list. the walk is scheduled for may 31 of this year and is designed to raise awareness about the need for organ donors, as well as to fund groundbreaking innovations in medicine that can make organ donation easier and more effective.
“it’s important to make things better for those people who are going to come after me. organ donation is still an unmet need. we still constantly need organ donors. it’s never enough,” she said. “until science outpaces that, we’re always going to need transplants.”
her other advocacy efforts, such as serving as a patient partner with the canadian donation and transplantation research platform and the uhn ai initiative, also hold a special place in her heart, which is why she continues to share her story.
“everyone deserves to live a life of good health and quality. life is so important, so whatever i can do to make that better, easier for people besides myself and the communities that i belong to and then society at large,” she said. “so, that’s kind of been the path i’ve pursued through work in public health, and now, this is much more personal and meaningful to help improve patient life and care.”
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she continued, “i’m very grateful. so much of it is just not taking things for granted, appreciating the people and the opportunities i’ve been given. there’s been some challenges, but i’ve also been given the opportunity to give back and to use a platform to share this story.”
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