Alon Freeman and his mother, Diane Freeman, have a lot in common. They’re quick to laugh, they love the theatre and they possess that enviable ability to eat well and somehow stay slender.
They also share a bond that runs deeper than the typical mother-son connection, one fused by a mutual recognition of mortality and second chances.
The Freemans are heart-transplant recipients. Diane, 72, received her new heart nearly six years ago. Alon, 42, got his last month.
So it is with the compassion of a mother – and the empathy of someone who knows – that today Diane is helping Alon recuperate in the north Toronto home she shares with Alon’s father.
“It’s hard to describe because not only is she functioning as my mom, but she is my mentor, my road map through this whole process,” Alon says. “She really knows more than anyone what I’m going through.”
The Freemans suffered from dilated cardiomyopathy, a condition in which the muscle of the heart loosens and stretches so thin that it is unable to pump blood effectively. Symptoms include numbness in the extremities, shortness of breath and fatigue.
There are no statistically reliable data on transplants of the same organ within a family, but experts believe such occurrences to be extremely rare.
“Anecdotally, I have not in my experience seen this before,” says Ronnie Gavsie, president and chief executive officer of the Trillium Gift of Life Network, a non-profit organization that co-ordinates and supports organ and tissue donation in Ontario.
Seventy-four people received heart transplants in Ontario last year, according to the organization. Twenty-eight heart transplants have been performed in the province so far this year, but 77 people remain on the waiting list.
While heart transplants are anything but ordinary, a study released at the Canadian Cardiovascular Congress in 2011 found that survival rates have steadily improved since the mid-1980s. The study showed that the survival rate was 86 per cent at one year, 75 per cent at five years and 62 per cent at 10 years.
“It’s like our family won the lottery twice,” Diane says.
She didn’t always feel that way. Within months of her heart transplant in 2007, her son was diagnosed with the same condition that had landed her in the hospital. Although neither knew it at the time, Alon’s heart was likely failing while he was standing at his mother’s bedside.
Diane knew what would come. The laboured breathing. The fogginess. The lethargy. The desire to flop on the bed on a sunny spring day.
And then there was the guilt.
“I found it really hard in the beginning,” Diane recalls of those days. “It was pretty hard for me to digest. As the mother, you see yourself as the bad seed provider.”
Physicians at Toronto General Hospital, where both Freemans were treated (the same surgeon performed their transplants), have thus far been unable to find a genetic link to their cases, but they say mother and son likely share a genetic mutation that has yet to be discovered. Alon’s 74-year-old father, Aaron, has no heart problems.
In the ensuing years, Alon’s life gradually shrank. That new film? He’d wait for the DVD. That new restaurant? He’d order takeout. On second thought, skip it altogether. Too much sodium. His interests narrowed through a funnel of fatigue.
By the time he was added to the waiting list for a new heart in January, even the simplest everyday tasks had become unmanageable. His work as a freelance wardrobe stylist and writer was put on hold indefinitely.
His mother knew the feeling, so she picked up the slack.
“She was getting me groceries and carrying my bags and I’m slinking behind her,” Alon says. “At an age when I’m supposed to be taking care of her, she was the one carrying my bags from the hospital.”
For Diane, a retired high-school guidance counsellor, seeing Alon through his ordeal is a retreat to her motherly instincts. But it is also an intimate extension of a new role in her post-surgery “second life.”
Since her transplant, she voluntarily counsels patients awaiting new hearts, listening to their fears, helping them navigate the system and offering reassurance. It is a path that Alon says he wants to follow when he is healthy enough.
Dr. Terrence Yau, the surgeon who performed their transplants, says Diane recovered spectacularly and that Alon’s convalescence appears to be following the same trajectory.
“He and his mother have both sort of lucked out,” Dr. Yau says. “I was thinking a couple of days ago how for Mrs. Freeman this is probably the best Mother’s Day she’s had in a while because she actually has her son back.”
Mother and son don’t over-analyze their connection. When two people are bound by a shared experience, there often isn’t much to say.
Over lunch at the Drake Hotel recently after a visit to the Peter Munk Cardiac Centre, where Alon’s progress is being monitored, they chatted about the mundane and planned what items they would gather from Alon’s apartment to bring to his parents’ home.
“He’s welcome to stay as long as he wants,” Diane says. “But I’d like to get him to start cooking. He likes to cook and I don’t. It’s one way we’re different.”