Shawn Hawkins didn’t smoke. He didn’t eat poorly. In fact, he took pretty good care of himself, including plenty of exercise and a healthy diet low in salt and fat.
And yet the 46-year-old Winnipeg man awaits a new heart.
"When I was a teenager, I thought I had a cold, and I went in for some tests," says Hawkins, a sales executive.
Hawkins didn’t have a virus. Instead he was diagnosed with cardiomyopathy — a medical term for heart-muscle weakness. What’s more is it was diagnosed as idiopathic, meaning the cause was unknown. Hawkins just had plain bad luck.
Over the years that followed, his heart’s ability to pump blood gradually decreased to the point where, last year, daily life became exceedingly difficult.
"Going to work was a struggle because I was out of breath all the time," he says. "Just getting up from the couch to get a drink from the fridge was a challenge."
Society often focuses on heart attacks and their chief cause — cardiovascular disease brought on by a combination of age, genetics and lifestyle.
Heart failure, however, often flies under the radar despite affecting hundreds of thousands of Canadians, says Christine Houde, director of government relations and health promotion for Manitoba Heart and Stroke Foundation.
"Heart failure is a growing epidemic."
About 50,000 Canadians are diagnosed every year, but the condition affects more than just patients. The toll is high for caregivers as well because the condition can be so debilitating. Despite heart failure’s impact, a 2016 survey by the Canadian Heart and Stroke Foundation found about one-quarter of Canadians do not know what it is, often mixing it up with other conditions such as heart attack and cardiac arrest.
"Almost one-fifth mistakenly think it’s a normal part of aging," she says.
In about 50 per cent of cases, heart failure is caused by cardiovascular disease, usually the result of a heart attack in which the heart muscle is starved of oxygen and tissue dies. This decreases the heart’s pumping power. Consequently, the body gets less blood, causing fatigue and shortness of breath, among other problems.
While treatable, heart failure is a chronic condition that cannot be cured, says Dr. Shelley Zieroth, head of medical heart failure program for the Winnipeg Regional Health Authority’s cardiac sciences program.
The St. Boniface hospital cardiologist says it’s the second leading cause of hospitalization for patients over 65.
"And it’s the third highest if you look at all age groups, and cost-wise it’s responsible for $2.8 billion of direct health-care costs per year," she says.
Heart and Stroke statistics show, depending on the severity of symptoms, half of patients die within five years and most within 10 years.
One of the leading causes of death from heart failure is progressive pump failure. The heart’s pumping power is so compromised the body’s organs do not get enough blood. Fluid accumulates in the lungs — as well as other parts of the body — resulting in a pulmonary edema, in which patients experience a drowning sensation.
"That’s why with patients with advanced heart failure we get palliative care involved because it’s really important to manage the symptoms," Zieroth says. "That can be done with narcotics, which help with the sense of shortness of breath, and it makes people feel more comfortable and less anxious."
Sudden cardiac death from a lethal heart rhythm is the other leading cause. Because it is so laboured, the heart — essentially run by electrical impulses — short circuits, stops beating and can’t be restarted.
Treatment of heart failure has improved significantly — one reason why the condition has become more common.
"We now talk about patients ‘living with heart failure’ more than we do ‘dying from heart failure,’ " Zieroth says.
Hawkins is among those benefiting from the improved treatments. What’s given him some normalcy is a portable device that helps his heart pump blood. Called an LVAD — short for left ventricular assist device — Hawkins underwent surgery that required opening up his chest similar to a bypass procedure to install the device just below his heart. Today the LVAD now has largely taken over the role of the left ventricle, the heart’s largest chamber and the one responsible for pumping oxygenated blood throughout the body.
"I carry around a bag with batteries and a control panel that monitors your heart pump," he says.
"Now I can go to the gym and pretty well get back to almost normal living — except for carrying the bag all the time."
Despite its benefits, only a handful of people have the device. That’s not because the technology — available in Manitoba for nearly a decade — is exceptionally costly. Rather it is a stop-gap measure for patients with extreme heart failure who are waiting for a transplant.
Not all patients are suitable for a new heart, however.
"Your heart has to be sick enough and the rest of you has to be well enough," to survive surgery, Zieroth says.
A suitable organ must also be found. Someone must die with healthy heart, be of similar stature and have signed a donor card or joined Manitoba’s organ registry (signupforlife.ca).
"Unfortunately, due to the low number of organ donors in Canada, there are a lot of people on the wait list and can be on it for two years or longer," Zieroth says.
Hawkins can work, and even exercise, but he cannot travel because he could get a call at any moment that a heart is available. He must be ready to leave immediately for Edmonton or Ottawa, where transplant procedures are done for Manitoba patients. Until he gets a new heart, he’s dependent on the battery-powered device.
His wife, Anita Maric, also plays a key role helping Hawkins with his medication, replacing batteries and ensuring the opening where the LVAD’s wires enter his abdomen remains clean.
On top of all that, Hawkins cannot be on his own in case the device fails, so he requires home-care services when his wife is at work.
While the device has been a life-saver, Hawkins looks forward to the day he won’t need the LVAD.
"It’s a little scary because who wants major surgery?" he admits. "But it’s something I need to do if want to get back to the basic living without carrying the bag all the time."