'I just had minutes left to live': Little known condition almost kills P.E.I. woman

After being pulled back from the brink of death when her aorta began to come apart, a P.E.I. woman is sharing her story as a warning to others.

It was February 2020, and Velda MacKenzie had no previous indications of a problem. She was healthy, a retired patient-care worker working as a fitness trainer.

"I had a pain in my back and it was a very sharp pain. I had numbness in my right arm, pain up my carotid artery in my neck, but the funny thing was I kept falling on the floor and fainting," MacKenzie said.

The fainting, in particular, was a problem. MacKenzie lives alone, so she had to make the call to 911 herself. But as she looked for her cellphone, she passed out several more times. Eventually she was able to get to her phone and make the call.

Family history is one of the few clues that you may be at risk of aortic dissection, says Dr. Gabrielle Horne, a cardiologist at the QEII Hospital in Halifax and director of the Maritime Connective Tissue Clinic. (Submitted by Dr. Gabrielle Horne)

Her problems continued after the ambulance took her to the hospital. Hours of tests — ultrasounds, bloodwork, electrocardiograms, X-rays — could not determine what was wrong with her.

Finally a CT scan revealed an aortic dissection, a condition most common with enlarged aortas where the different layers of the body's main artery begin to come apart. She was airlifted to Halifax and rushed into surgery.

"I just had minutes left to live," MacKenzie said.

During an 11-hour surgery, doctors replaced a section of her aorta with an artificial material.

But her life is changed.

She can no longer be as active as she once was. She gets out for daily walks, but needs to use a cane.

'Easy to misdiagnose'

The symptoms MacKenzie described are typical of aortic dissection, but it is not surprising it took doctors at the emergency department in Charlottetown so long to diagnose her, said Dr. Gabrielle Horne, a cardiologist at the QEII Hospital in Halifax and director of the Maritime Connective Tissue Clinic.

"Because the symptoms can be difficult to separate from a lot of other much more common problems, it's so easy to misdiagnose in the emergency department," Horne said.

While the condition is difficult to diagnose when it is acute, at which point the situation is urgent and deadly, it is virtually impossible to detect in advance.

"It almost certainly won't give you any symptoms," Horne said.

"You may know that you have a family history of people dying suddenly or people having enlarged aortas. If that's the case, that's the clear flag that you need to be checked."

With the benefit of hindsight, MacKenzie now suspects she has that family history.

Her father, who had been diagnosed with heart problems unrelated to his aorta, died suddenly in 1988. It was presumed to have been a heart attack and no autopsy was conducted. Knowing the symptoms now, MacKenzie believes her father had an aortic dissection.

It is a source of frustration for Horne.

"When it comes to people dying suddenly in the family there tends to be an assumption that it was a heart attack and that's not always the case," she said.

"The only way to separate those two things out is an autopsy."

Because autopsies aren't being done, it's difficult to say how common aortic dissections are.

Seeking support

Horne said there are treatments available.

Those include changes in lifestyle that can reduce stress on the aorta, tight control of blood pressure, and medication that may slow the enlargement of the aorta. Surgery to repair the aorta before it tears, a much safer option than waiting for a crisis, is also an option.

MacKenzie is still recovering, and for a time that recovery was a lonely one.

"I couldn't find anyone who had an aortic dissection," she said.

Eventually, MacKenzie discovered a group called Aortic Hope, and co-founded a chapter in Canada. You can find more information on the group's website.