Getting to the heart of the matter

Professorship brings cardiac arrhythmias to the forefront in B.C

“Every place I am, I have a picture with me of Paul,” says Per Brunes.

On this day, reached by the North Shore News from his secondary home in Scottsdale, Arizona, the 71-year-old West Vancouver resident takes a minute from the interview to look at one such image.

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“It’s a happy picture,” says Per, describing the photograph given to him following the sudden death of his son at age 31 on March 13, 2010.

The treasured photo shows Paul on the famous Swilcan Bridge, situated between the first and 18th fairways of Scotland’s St. Andrews Links. Paul, an employee of his now-retired father’s company, Brunette Industries Ltd., had paid a visit to the landmark club while on a work trip.

“After Paul’s passing, I wanted to do something,” says Per.

Although he’d sought medical attention at various points throughout his life, complaining of a racing heartbeat, it wasn’t until after Paul’s sudden passing that his diagnosis became clear: he had suffered from a cardiac arrhythmia, a heart rhythm disorder.

“If you read about an athletic kid falling down in a game or . . . on an ice rink, this is exactly what it is. That’s what Paul had. They all can be saved,” says Per.

Interested in sparing other families from a similar ordeal, Per launched the Paul Brunes Foundation and partnered with the VGH & UBC Hospital Foundation to establish the Paul Brunes UBC Professor in Heart Rhythm Disorders. Since 2012, that role has been held by West Vancouver’s Dr. Andrew Krahn.

Recognized for his expertise in the management of cardiac arrhythmias, Krahn wears a number of hats in addition to the professorship. Since his recruitment he has continued to make headway on a variety of fronts, including clinically, serving and identifying increasing numbers of patients throughout the province as well as their families, due to the potentially inherited nature of the conditions. It’s estimated 7,000 people in B.C. are affected by an inherited heart rhythm disorder.

He’s in the midst of a variety of research projects too, mainly focused on genetics and the improvement of testing methods. In addition, Krahn continues to take a leadership role, working to connect patients across the country with needed support, as well as medical staff and researchers working in the field.

Krahn is being increasingly called upon to share his knowledge internationally. Last month, for example, he spoke to medical professionals in Johannesburg and Cape Town, South Africa.

“He is a visionary,” says Per.

Both men are calling for increased public awareness of cardiac arrhythmias.

“This is something that although it is uncommon, affects our young people who have so much to lose at a stage in life where they are vulnerable. These are conditions that typically (exact) their toll on teenagers and young adults whose life is mostly in front of them and are usually not aware of (their risk.) Without disrespecting things that happen later in life where we’re all trying to live better and live longer, the idea of the teenager who collapses on the ice and dies suddenly, is something that is just abhorrent,” says Krahn.

• • •

Sudden deaths from cardiac arrhythmias differ from more common cases of deaths due to a heart attack or stroke.

A common analogy Krahn uses to describe heart rhythm disorders is The Story of Goldilocks and the Three Bears.

“The heart is in a certain kind of natural or balanced state. When the heart signal is too fast, or it’s too slow, or it’s too high, or it’s too low, those kind of extreme conditions are the things that set off abnormal heart rhythms,” he says.

A variety of cardiac arrhythmias exist, ranging in severity.

While incurable, early diagnosis can be lifesaving, with treatment focused on management and prevention of a potentially fatal cardiac arrest.

Treatment options include: lifestyle changes related to exercise levels and avoiding certain medications that could cause harm; the prescription of beta-blockers; and, in rare cases, more invasive strategies like the use of pacemakers or implantable defibrillators.

The challenge is diagnosis, as many of those affected can appear perfectly healthy. However, warning signs include fainting, a heart-related issue that causes someone to seek medical attention (chest pain, palpitations or an abnormal test result), or when something happens to a family member.

Much of Krahn’s career has been dedicated to investigating inherited arrhythmias as a means of improving identification of those affected before it’s too late.

“Our awareness of this is just much less because the person who’s lost isn’t there to advocate,” says Krahn.

In addition, in the last 40 years, heart health information that’s been publicly disseminated has more commonly focused on smoking, cholesterol, healthy lifestyles and heart attacks.

“The public message about heart rhythm problems has been kind of buried underneath,” he says.

Things are changing, with increased focus on heart rhythm problems in recent years, evidenced by the continued installation of automated external defibrillators in public places.

• • •

Approximately 20 years ago, Per recalls spending time with a friend from his native Sweden who, six months prior, had lost his son on a hiking trip in China.

“We talked about him and I thought I could relate. And when I lost Paul I understood I didn’t have a clue. You’re so far off in your mind between hearing and sympathizing. I think we’re well put together by whoever made sure that our brain works the way it does, because if we could go there to think how you would feel if you lost your son and daughter, it would drive us crazy. I don’t think we could make it past the day even,” he says.

Paul’s death came as a shock not only to his immediate family, including mother Kathy (she and Per divorced in 1990), and older sister Tania, but was widely felt in the community, seeing approximately 800 people attend his celebration of life held at the Capilano Golf and Country Club.

“Nine out of 10 of his old girlfriends were there,” his father laughs. “Paul, he was life itself. Of course every parent says that about their children, but it wouldn’t matter who you asked, Paul was the life of everything. He was always happy. He always said, ‘Dad relax. Relax. We haven’t come to the end of the earth. Just relax. Take it easy dad. It will fix itself.’ Nothing was ever a problem with Paul. He was a helpful person. At the grocery store, if a lady had grocery bags too heavy, he could grab the bags and say, ‘Where’s your car ma’am?’ He talked to everyone. How he became that I don’t know.”

Paul, who attended Collingwood School and graduated from West Vancouver secondary, was an avid outdoorsman, passionate about snowboarding and snowmobiling in winter, and water sports in summer.

At the time of his death, he had just moved into a house in North Vancouver and had been dating a “very nice girl,” Per says.

He was working at his father’s company, having moved up the ranks to a position in marketing and sales at the New Westminster-based machinery manufacturer serving the North American forest products industry.

While Paul had complained on a few occasions throughout his life of a racing heart, resulting in trips to the emergency room, appointments with his doctor and even a heart specialist, his otherwise robust health left those around him with little cause for alarm.

Neither of Paul’s parents understood that what Paul had was quite dangerous.

“He went to a GP and he almost went so many times you feel that you’re abusing the system,” says Per.

Paul’s first major incident occurred in January 2010 while he was snowmobiling. He passed out, blaming it on a lack of oxygen due to a snow-packed helmet. Once again, Paul was checked out and underwent a number of heart-related tests. Still no diagnosis was issued.

In the months that followed, Paul was to have been referred to a local cardiac specialist. After the 2010 Winter Olympics, Per had also planned on taking him to Arizona to meet with a cardiologist at the Mayo Clinic, whom Per had recently met as part of a routine check-up while vacationing down south.

Sadly, two months later, Paul experienced a second incident while snowmobiling — this time taking his life.

In the wake of Paul’s death, Per’s purpose in life became clear: to ensure his son didn’t die in vain and that his death might somehow prevent other families from experiencing a similar tragedy.

Interested in starting a foundation, a University of British Columbia cardiologist suggested Per connect with the VGH & UBC Hospital Foundation. He scheduled a meeting, and representatives shared their wish list of future projects. Cardiac arrhythmia was among them.

“They said, ‘This has been pushed off.’ And I said, ‘Why don’t we bring it to the forefront? What will it take?’” says Per.

Per committed to making a large personal donation, as well as to conduct fundraising through the Paul Brunes Foundation.

Continued meetings with the VGH & UBC Hospital Foundation and other stakeholders resulted in the welcoming of Krahn in October 2012 as the Paul Brunes UBC Professor in Heart Rhythm Disorders and the Sauder Family and Heart and Stroke Foundation of BC & Yukon Chair in Cardiology.

Krahn was also head of the division of cardiology in the UBC Faculty of Medicine, and at that time, head of the VGH Pacemaker Clinic. He currently holds all of those titles with the exception of the last one. Krahn’s role was supported by $5.5 million from all groups listed, as well as Providence Health Care and Cardiac Services B.C. Money is used to support patients, fund vital research and for the creation of a team to deliver state-of-the-art care.

“It’s good for everyone in B.C. that we finally have . . . someone driving and responsible for (arrhythmias),” says Per.

• • •

Prior to moving to the Lower Mainland three years ago, Krahn, 50, was previously based at London’s University of Western Ontario.

He recalls an encounter in the later stages of his medical training that set him on his current path. He saw two brothers whose grandmother had collapsed and died after getting up to answer the telephone, leaving their mother, who was then three years old.

Krahn met their mother when she was 40 and the brothers were teenagers. It became clear the boys had some form of an inherited heart rhythm disorder running in their family. The question Krahn faced was how to identify what they had, what the risk was and how best to treat them to prevent what had happened to their grandmother from happening to them.

His subsequent career has been dedicated to evaluating, treating and trying to prevent sudden death in these kinds of patients. Highlights include leading a national research study that detected rare genetic conditions of people who experienced a sudden cardiac arrest, as well as their family members, despite their outward picture of health. He also launched one of the first clinics serving those affected in Canada, having developed a system for evaluating patients, as well as simultaneously conducting research.

“We now have 13 centres across Canada that evaluate families like the Brunes family where somebody has died suddenly, to try to understand the reason for it, or whether anyone else is affected, or whether there is risk to other family members,” he says.

Krahn has continued his work since moving to West Vancouver, including launching, in early 2013, the B.C. Inherited Arrhythmia Program, a province-wide network of clinics serving patients and their families. The majority of patients are seen at Vancouver’s St. Paul’s Hospital, and others at Vancouver General Hospital and at Victoria’s Royal Jubilee Hospital.

Outreach clinics are offered in the northern part of the province and video conferencing is used as required.

Patients come to the program either because they or someone in their family is believed to have one of these conditions due to testing; or in light of an incident that has occurred in their family — a sudden death for instance — that has raised concern other family members could be affected. Patients can access the clinics by referral, or by contacting the program directly.

The care of patients is team-based, with input from specialists in pediatrics and adult cardiology, genetics, nursing and trainees. Krahn sees the majority of patients himself, but based on demand for services, they will soon be adding a new doctor who will have a similar-sized patient load, increasing the number of people they can serve.

The program has seen approximately 1,000 people so far, and 40 families who’ve experienced a sudden death have been brought to their attention.

Krahn likes to make a joke that he’s a family doctor, but not in the traditional sense, as he typically sees whole families at once, often meeting with groups of relatives in conference rooms.
“We’re creating a partnership or a relationship with a family to try to help (them) understand what they have and then also try to understand risk and then prevent it,” he says.

The clinic program also enables the medical team to conduct research, and a month ago, they surpassed 500 patients in their research database, with a number of those contributing DNA samples to their biobank.

Krahn says they currently have 15 to 20 projects on the go. One is focused on testing all of the DNA, not just the heart rhythm genes, a capability that hasn’t existed until recently. This is allowing them to look at new genetic information that might be contributing to why these people are at risk. Another project is seeing them work to develop better tests to understand risk, and help them determine if they can become better at predicting a problem and then employ effective prevention measures.

Krahn is also engaged in networking, not just provincially, but nationally. He has led the development of the Canadian Genetic Heart Rhythm Network, a network of clinics ensuring patients have access to experts. The network also ensures experts have access to patients to assist in the advancement of treatment and research across the country.

“I am absolutely passionate about the idea that we are on the right track, that we are building in the right direction and I’m very fulfilled and rewarded in how far the program has come,” says Krahn.

• • •

Per knows his son Paul would be proud of the work he’s done in his honour. “He would say, ‘Way to go Dad. Don’t give up. Make sure that you get the message out,’” he says.

“My goal was to save one and Dr. Krahn has told me, ‘You already accomplished that,’” he adds.

While Per is incredibly grateful for the support received for the Paul Brunes Foundation, and overwhelmed by the speed at which positive change is happening, there’s still a way to go in raising both awareness and funding. His goal is to raise an additional $2 million for the VGH & UBC Hospital Foundation to ensure the continued success of the Paul Brunes UBC

Professor in Heart Rhythm Disorders long into the future. “I will not rest until I know that this will succeed,” he says.

To make a donation to the Paul Brunes Foundation, visit paulbrunesfoundation.org.

For more information, visit heartrhythmresearch.ca or phsa.ca/our-services/agencies/cardiac-services-bc/bc-inherited-arrhythmia-program.

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