Over 800,000 people in Canada (and 90,000 in BC) live with heart failure at any given time. Each year over 90,000 are diagnosed with this disease, with 20 per cent of those among British Columbians.
“Heart failure occurs when the heart does not pump or relax well and doesn’t send enough blood to the body,” explains Dr. Sean Virani, head of cardiology at Providence Health Care. Fluid can build up too, in the legs or lungs.
There are many causes of heart failure, says Dr. Virani. It can be genetic. It can result from the use of alcohol or illicit drugs. It can be from coronary artery disease, which often occurs in older people.
But the thing to remember is, it can affect those of any age – even young people. It is not just a disease of the elderly. “Those diagnosed with heart failure at a young age may often be survivors of childhood cancer treated with potentially toxic chemotherapy/radiation therapy,” explains Dr. Virani.
Two former patients at Providence Health Care’s Heart Centre illustrate how young people can suffer heart failure without an obvious explanation.
Jillianne Code and Marc Bains each experienced, at a young age, breathlessness and other symptoms typical of heart failure. They had been living their lives studying, travelling and working towards their life goals. A diagnosis of heart failure was the farthest thing from their minds.
Code was diagnosed in 2005 with heart failure, just after she’d finished a graduate degree. Bains was just 23, had just graduated and had finished a six-month trip around the world.
Both were eager to head into the next phase of their lives.
They had both been experiencing unexpected symptoms that were alarming enough to seek medical advice. Six weeks before starting a PhD, Code collapsed with heart failure. Bains developed a persistent cold, flu and bronchitis-like symptoms. He felt crushing fatigue and could hardly walk up a flight of stairs. He could not sleep flat due to severe coughing. He developed extreme shortness of breath.
Finally, he went to Emergency.
Shortness of breath a key symptom
A main heart-failure symptom is unusual shortness of breath. Many do not recognize it as a symptom, so it is often missed or attributed to being tired. Fatigue is a common symptom. It is also downplayed, especially by younger people who don’t expect to have heart failure.
Despite their age, Code and Bains did seek medical advice and were diagnosed with heart failure. Code underwent her first transplant in 2014 but then required a second one after she suffered a massive heart attack in 2017. She received the second heart in 2018. Bains received his transplant also in 2018, becoming the 500th heart-transplant recipient in BC.
Both had long, difficult journeys to recovery. But they are doing well today and have used their experience to advocate for other people living with heart failure.
They’ve received national and international recognition for their advocacy work as founding members of HeartLife Foundation, a Canadian, patient-led heart-failure organization.
Since its founding in 2016, it has grown across the country and received international recognition. It not only supports patients and their caregivers but, importantly, brings a strong patient voice to health care innovation and transformation for the management of heart failure.
This year, the pair will host a national webinar for health care providers and patients and their families, sponsored by HeartLife Foundation and Heart & Stroke Foundation.
Titled It is not Normal to be Breathless: Understanding the Signs and Symptoms and Advocating in Canada, it takes place on May 7, 2024, at 9:00 am Pacific Time. Click here to register.
This year’s Heart Failure Awareness Week campaign focuses on specific tips to pursue a diagnosis and manage heart failure to:
- know the signs and symptoms,
- understand your risks,
- take action to seek medical advice for diagnosis and management,
- advocate for your own care,
- adjust your lifestyle,
- take your medications as prescribed,
- keep vaccinations up to date,
- keep physically active, and
- seek mental health support if needed.
The event will also provide highlights on a national heart failure strategy and outlines a systems evaluation for heart failure, provincially and nationally.
Heart Failure Awareness Week takes place May 5 to 11. In Vancouver and across the country, a special lighting tribute will bring attention to heart failure, with red lights on display at Canada Place, BC Place Stadium and Science World in Vancouver.
Story by Suzanne Nixon, Canadian Heart Failure Society
