For Mary-Ann Leonowicz, celebrating her 50th birthday last year meant more than just reaching a milestone.
"I wasn't supposed to live past 48," says Mary-Ann, a UHN Patient Partner and volunteer who has Vascular Ehlers-Danlos Syndrome (vEDS), a rare connective tissue disorder that weakens the tissues around muscles, arteries and internal organs.
"When I turned 50, that was a pivotal point in my life. I realized, I'm still here, I haven't died, I need to rethink everything."
Since she was diagnosed with vEDS in 2011, Mary-Ann's journey at the Peter Munk Cardiac Centre (PMCC) has involved open-heart surgery, two cardiac rehab stints and numerous life-saving procedures.
Now, she's taking on the starring role in a new series of modified yoga videos created and produced by two nurse practitioners at PMCC.
"I needed to be social and help people," says Mary-Ann, who after her second bout of cardiac rehab decided she wanted to give back and spend her spare time volunteering for UHN.
"I have always had an interest in medicine, so it just fit.
"I still have a good brain. I wanted to use it and help others."
A variety of modified yoga moves
Over the years, Mary-Ann's volunteering has led her to become involved with PMCC's Modified Yoga Program (MY). Launched in 2016, it's a form of cardiac rehab designed to help patients with the challenge of recovering from heart surgery.
The program, which runs out of PMCC, consists of a variety of modified yoga movements including stretches, mediation, breathing exercises and yoga poses that aid patients in post-cardiac surgery recovery.
"After cardiac surgery, a big part of patient recovery is doing deep-breathing exercises," says Barbara Bailey, co-founder of the MY program and a nurse practitioner with PMCC. "The exercises help compliment and build on what has always been done after cardiac surgery."
Barbara and her colleague, Shereli Soldevilla, also a nurse practitioner with PMCC, have transitioned the program over the years to include more meditation and pain-controlling techniques.
"When you tell a patient to practice their deep breathing because they must, it's hard because it's so painful," adds Shereli. "The MY program helps them engage in the practice of deep breathing while learning how to manage that pain through other approaches."
While feedback from the MY program has been overwhelmingly positive, patients often note that once they're back at home, remembering what they learned is difficult without guided instruction. With the help of Mary-Ann, Barbara and Shereli have worked to film and produce four videos intended to help patients continue the MY program from the comfort of their own home.
"The videos help to reinforce the must-do's after cardiac surgery, which is physical activity and deep breathing exercises," says Shereli. "But they also focus on the mental health aspect that patients will likely need help with.
"Cardiac surgery is a huge stress in their lives."
Great way to engage patients in cardiac rehab
The four videos, which focus on breathing, mobilizing joint movements, spinal movements, and gratitude practice, feature a certified yoga instructor and Mary-Ann as the demonstrator.
"It's nice for patients to see someone who has also had open heart surgery do the movements," says Mary-Ann, who as a certified yoga instructor teaches the MY program in-hospital every Friday.
"Yoga can scare some people as they think they're going to be twisting and doing all these fancy moves," she says. "But yoga is a lot more than just the poses.
"It's about your breathing and how you compose yourself."
Dr. Paul Oh, Medical Director of the Cardiovascular Prevention and Rehabilitation Program at PMCC and Toronto Rehabilitation Institute, says yoga is a great way to get patients engaged in their cardiac rehabilitation journey.
"Yoga is very beneficial to patients recovering from cardiac surgery," says Dr. Oh. "Some of the elements behind yoga are already incorporated into cardiac rehab, such as meditation and stress reduction.
"But using yoga as an early intervention is certainly interesting and unique."
Barbara and Shereli hope to continue filming and producing MY yoga videos that can be used by post-cardiac surgery patients once they're discharged from PMCC.
"It's something very small, but it may help a lot of people," says Shereli.
Outside of teaching weekly MY sessions, Mary-Ann practices yoga up to four times a week. Her heart, which operates at more than double the efficiency now compared to when she was first diagnosed with vEDS, has a soft spot for the physical, spiritual and healing practice.
Volunteering with the MY program has been a source of happiness for her amidst health difficulties throughout the past years.
"It's a great feeling knowing I've helped these patients, even though all I've done is share some time and knowledge," says Mary-Ann. "I try and always tell people that you're a warrior now.
"You have this white scarred line in the middle of your chest - you've made it. You have to keep going."
The Modified Yoga Program at the Peter Munk Cardiac Centre was founded in 2015 with the help of Barbara Bailey and Dr. Rima Styra. Officially launching in 2016, the following individuals have been instrumental in helping the program run smoothly and efficiently: Katelynn Vera Corman, Amanda Trinh, Mary-Ann Leonowicz, Sharon McGonigle, Shereli Soldevilla, Steve Schuurman and Linda Flockhart.