Virtual event reunites the heart transplant community

Double-heart transplant recipient Michelle Rambarran likes to pay tribute to both her donors by frequently telling her own family that she loves them “with all three of my hearts.” (Photo: UHN)

Transplant is life-changing. For those who receive heart transplants, the connection to their donors runs especially deep.

“Before my first heart transplant, my mother called me and said ‘pray for the donor, pray for their family, they are in mourning right now,'” recalls Michelle Rambarran. At the time, Michelle was a 32-year-old new mother.

“That conversation is something I’ll never forget,” she says.

Now, nearly 15 years and a second heart transplant later, Michelle gives an ode to her donors by frequently telling her family that she loves them “with all three of my hearts.”

Michelle’s gratitude to her donor and their family, as well as the team at the Peter Munk Cardiac Centre, is palpable.

Michelle suffered a spontaneous coronary artery dissection in 2005, and was listed for transplant two years later. To keep her native heart for as long as possible, doctors encouraged Michelle to exercise as much as she could.

‘It’s about building community and supporting each other in recovery.’

This commitment to well-being is something that Michelle continues to advocate for not only for herself, but also for the heart transplant community.

Throughout the month of June, Michelle organized and participated in the Step Together Challenge, an event led by the HeartLinks support network at the Peter Munk Cardiac Centre. Participants tally their weekly steps and submit them to team captains to track their progress.

Michelle is quick to emphasize it’s not a competition – despite the name.

“You don’t know what stage of transplant each participant is in,” she says. “So, it’s more about building community and supporting each other in recovery.”

While the pandemic halted in-person events, HeartLinks found an opportunity to create their first virtual event to bring the team together. Though only in its second year, the Step Together Challenge has grown to more than 100 participants.

HeartLinks started in the 1980s as a support network for heart transplant recipients and their families. It has since grown to be an important source of strength and community for heart transplant recipients, left ventricular assisted devices (LVAD) recipients, families and caregivers receiving care and support at the Peter Munk Cardiac Centre.

“It’s nice for us to talk about our experiences with someone who has also gone through it,” says Michelle. “You build a bond and a friendship.

“There are things that an ordinary person might find easy to do that are tough for us, and talking about those similarities reminds us we’re not alone.”

Patient support journey at the Peter Munk Cardiac Centre

The support that is available through HeartLinks and other programs at the Peter Munk Cardiac Centre is invaluable to the wellness of patients and families, says Michelle. Having the support of therapists, other patients, and the staff helps ensure that no patient is ever alone.

Stella Kozuszko, a nurse practitioner who worked with heart transplant patients for more than 20 years, has seen patients through the highs and lows of heart transplant.

When Michelle found out that she needed to get a second heart transplant, Stella was right there by her side to coach her through it.

“Stella has always been the one to say, ‘it’s not the end of the world, it’s a stepping stone,” Stella says. “We’re going to figure this out together.'”

The Peter Munk Cardiac Centre provides the opportunity for our patients to live their lives and achieve their goals, says Stella, who worked with HeartLinks and has known many of its members for decades.

“If a patient is down, we help re-centre them and remind them to look forward,” she says. “You really become a part of their family.”

Michelle’s advice to those who are just beginning their journey is to use the supports offered to you.

“I’m not going to say this journey is easy because it’s not,” she says. “But the team here is amazing – the support and the hope they give to their patients means the world.”

To learn more about HeartLinks and their events, visit them on FacebookTwitter or Instagram. If you are a heart transplant recipient or caregiver and would like to get more information on speaker events, celebrations for heart recipients and caregivers and other activities, email the HeartLinks team at [email protected].

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