UHN is celebrating Heart Month with courageous stories of the heart. Thanks to patients from The Peter Munk Cardiac Centre and Toronto Rehab's Cardiac Rehab program for sharing them with us.
Deb Anthofer, a 53-year-old mother of two, was born in Garson, Ont. In 2012, her small mining hometown outside of Sudbury became the first community in Ontario to have an organ donor registration rate of more than 50 per cent. Garson’s distinction was never more important to Deb than five years ago when her heart began to fail.
In 2008, at the age of 49, her cardiologist confirmed she was suffering from heart failure. But “failure” was something Deb couldn’t accept.
“I understood that I’d need a heart transplant in my lifetime, but wanted to know what I could do to stay on that side of transplant for as long as possible,” said Deb, who was then sent to the Cardiac Rehab program at Toronto Rehab.
“Cardiac rehab clearly improves quality of life, exercise performance and lowers the risk of dying or being hospitalized for heart failure,” said Deb’s cardiologist, Dr. Heather Ross, Medical Director, Cardiac Transplant Program and the Ted Rogers and Family Chair in Heart Function.
A steady dose of walking
“I embraced Cardiac Rehab as a lifeline,” said Deb. “I was asking everyone there, ‘Tell me what I can do to feel better and have a better quality of life’.”
One of the people Deb sought answers from was Toronto Rehab's Rob Bertelink, Supervisor, Cardiac Rehab.
“One of the many problems with a failing heart is that it has a hard time meeting the body’s demands for oxygen rich blood,” said Rob. “This means doing any kind of activity is very hard.”
Many people with a heart condition may think it’s easiest to sit and do very little – which was how heart failure was actually managed until the mid-90s. Now it’s known that even with end-stage heart disease, a patient can still strengthen muscles and other organ systems. It’s an important finding since one of the biggest issues with heart transplant is that the patient often has more than heart problems.
“Asking the sick patient to undergo a gruelling surgery is sometimes more than their body can handle,” said Rob. “By doing the exercise and weight training program, Deb increased her odds of surviving the transplant and made her recovery much quicker as well.”
The impact of her hard work wasn’t lost on Deb either.
“I’m so thankful for every mile I walked and every weight I pumped here because it’s served me so well,” said Deb while at Toronto Rehab’s Rumsey Centre.
Part of the regimen of cardiac rehab involves a walking prescription – which involves a set distance to walk each week. In Deb's case, it was from one to three kilometres. Some of the distance is covered with the Cardiac Rehab group, but patients also log kilometres over the course of the week on their own. Their care team is always checking in to ensure the prescribed distance is right.
‘Hope’
Medication and cardiac rehab delayed Deb’s heart failure progression for more than a year, but eventually, her heart could no longer pump enough blood for her body— she needed a heart transplant.
In June 2009, at the age of 50, Deb was admitted to UHN’s Peter Munk Cardiac Centre and placed on the heart transplant list.
“We were relieved and excited,” said Deb’s daughter, Michelle Anthofer, 23. “It meant that there was hope.”
In July of that year, Dr. Ross told Deb the news– a new heart was waiting for her.
For Deb's family, it was joyous news. As they rushed to the hospital to be with her, Deb was being prepped and readied for surgery.
“Deb was getting sicker by the minute,” said Dr. Ross. “If she’d waited another day or two for a heart, she may have been too sick for transplant and wouldn’t be here today.”
Eye of the Tiger
Michelle and her brother Michael made it to Deb’s side before the transplant. Michael had a special send-off ready for his mom. He pulled out his iPhone and began playing the Rocky song,
Eye of the Tiger.
“I remember being wheeled away and my kids are going dun dun dun dun da da da da,” said a proud Deb. “As sick as you are, that sticks with you.”
After hours in surgery, Deb emerged from the operating room with a new heart.
“When mom first came out of after her transplant she felt so great,” said Michelle. “That heart has been so happy in my mom’s body.”
No time to rest
Even with her new heart, Deb’s journey wasn’t over. Dr. Ross reminded that a new heart had to be cared for.
“A transplant is a treatment, not a cure and Deb needs to manage her condition like any chronic disease – with healthy diet, regular exercise and medical management from a multi-disciplinary care team,” said Dr. Ross. “It is an ongoing challenge to find the right balance of anti-rejection drugs to keep her heart healthy and not harm her immune system.”
Deb’s rehab supervisor, also reinforced the message.
“When I woke up in CCU after transplant, I had a visit from Rob,” said Deb. “I could hardly move but he brought me a TheraBand. How motivating is that? It was like, ‘Here’s the vision, you’re going to get moving again. You’re going to get back working with us and get healthy again.’”
“Showing up and telling them they’re not off the hook…gives them a sense of hope,” said Rob. “They’re so sick and death seems imminent but they figure that, ‘Rob wants me to exercise so that must mean I’ll survive, life will continue after this horrible experience,’.”
Back on the horse
Soon after her transplant, Deb found herself in familiar surroundings at Cardiac Rehab. She was part of a new rehab group, one made up entirely of heart transplant recipients.
“Unless you’ve been there, you really don’t know how it feels to live that way,” said Rob. “They’re finally in a group where everyone is in the same boat. When one patient mentions having to go for a heart biopsy, the others are there to offer firsthand advice and support.”
Deb says she’s fortunate to be in a group of her peers.
“There aren’t that many people who’ve had a heart transplant,” said Deb. “At Cardiac Rehab, I get a chance to be motivated by others in similar circumstance and also be their support system. It’s more important than you know.”
Deb said her mindset at rehab is different now.
Five years ago, she went to Cardiac Rehab to help prevent her heart from failing. Today, her new heart is healthy and she goes to Cardiac Rehab to get stronger. No longer sick, she can breathe and do the activities around the house she loves, like cooking, and enjoying the time with her kids.
“I absolutely owe my life to The Peter Munk Cardiac Centre, Dr. Ross and the whole team there, to the transplant surgeons and to the wonderful, wonderful person who donated their heart and to that donor’s family that let me have this heart that day,” said Deb, pointing to her chest. “And the reason I was strong enough to make it to transplant and recover was because I had come to Cardiac Rehab.”
Deb now lives in Unionville, Ont., which is 175th of Ontario’s 179 donor communities. Only 10 per cent of residents are registered organ donors.
Today she’s part of the York Region Gift of Life Association, volunteering to help raise the number of registered organ donors in the GTA.
“If I can give back and help even one person who was in the position I was, that would be awesome,” Deb said.
There are roughly 1,500 Ontarians waiting for an organ transplant. To become an organ donor, register at www.beadonor.ca.
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