A patient inspires doctors to learn more about a rare and potentially fatal heart disease

On a bright, cold winter day, Anne McAllister is wrapped in scarlet as she takes a brisk stroll along her Ottawa street.

The color of her coat is appropriate. She is like a beacon for the place that restored her health.

“We are incredibly fortunate to have an institution like the Ottawa Heart Institute here in Ottawa,” McAllister said.

February is the month of the heart.

And McAllister’s heart is filled with gratitude to the lifeguards who work at the University of Ottawa Heart Institute.

“They come from all over the world because it attracts the best brains and best scientists,” the 71-year-old said.

It was more than ten years ago that the same minds and researchers wanted to help Anne with a sudden change in her heart health.

“I could feel my heart pumping. I would turn very red. I could feel myself getting overheated,” she said.

To begin with, McAllister had frequent bouts of arrhythmia – a heart that raged.

“I had a series of what they call tachycardia, very fast pulse.”

And not long after, she began to experience Bradycardia.

“Which is a very low heart rate, like in the 30s,” she said.

Anne McAllister

McAllister was admitted to the University of Ottawa Heart Institute, where a pacemaker was implanted to correct her heart rate.

“And everything was fine until two years later, when things changed again,” she said.

It was 2009 and Anne was now back in the hospital with heart failure.

The doctors realized that the healthy and active patient had more than one typical arrhythmia. Eventually, McAllister was diagnosed with cardiac sarcoidosis; a rare and potentially fatal condition that had disappeared undetected during her first visit to the hospital.

“That’s why I’m so bad about Anne’s case. We missed it for two years and she sustained significant damage,” said Dr. David Birnie, a cardiophysiologist at the University of Ottawa Heart Institute.

Sarcoid is an auto-inflammatory disease. It can affect any organ in the body. Its cause is unknown.

Between 20,000 and 30,000 people live with sarcoidosis in Canada. Only five percent of these patients will experience significant heart-related problems. It affects people in their prime, aged 30 to 60 years.

There is no known cure, but early detection is essential.

“Untreated, or if we do not take it up early, it can be fatal because in some patients the heart gradually becomes more and more damaged,” said Dr. Birnie.

With medication, doctors were able to prevent further damage to McAllister’s heart. Her case inspired Dr. Birnie to begin researching a disease that many in the medical community did not know very much about. Cardiac sarcoidosis would become a focal point for Dr. Birnie’s research.

“I was just very fascinated by this disease and the potential to help people,” she said.

In 2014, Birnie and others published the first international guidelines for diagnosing the condition. A study is underway where a register is conducted with 1,500 patients from 15 hospitals.

And the Ottawa Heart Institute now runs a Cardiac Sarcoidosis Clinic, which receives 100 referrals a year.

Anne McAllister

Anne’s heart disease marked an abrupt end to her career as a lawyer in the Federal Ministry of Justice at the age of 59.

“I came home from work on a Friday and went to the cardiac clinic on the weekend and never went back to work,” she said.

Today, Anne lives a full life. However, heart failure has meant accepting change.

She gets tired of walking up hills, has less stamina and needs help with some outdoor chores, such as gardening.

She trains regularly with a trainer and has been equipped with a pacemaker defibrillator.

“It’s my own little defibrillator that will go off if I have a heart attack,” she said.

McAllister is an avid traveler and is eager to see the world again.

“I want to be excited when I can get on a plane again and go somewhere,” she laughed.

For now, Anne is giving back to the place that has given her so much.

“In 2018, I was named ‘Volunteer of the Year’ at the Heart Institute,” she said with a smile.

“It was exciting. I was very grateful and humbled to receive that award.”

You can donate to the University of Ottawa Heart Institute at Februraryisheartmonth.ca.

Your donations will be matched this month by the department’s community champions.

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