When Marilyn Mills started feeling congested while on vacation in the spring of 2015, she didn’t think much of it.
A healthy 50-year-old, Mills assumed it was a cold. But when she returned home to Kentville and the congestion persisted, she worried that it might be a chest infection. Although her breathing difficulties and overall sense that “something wasn’t quite right” resulted in 12 visits to see physicians between the end of April and August of that year, she was repeatedly assured that all was well.
“I felt like I was congested and I couldn’t breathe and I was very fatigued. I couldn’t walk my normal route to work anymore and had to call for a ride to work or to home,” Mills, now 58, recalled. “The doctors kept saying that my lungs were clear and I kept asking for an x-ray just to confirm that it was clear.”
No x-ray was ordered, but she was treated (and ultimately misdiagnosed) for chronic obstructive pulmonary disease (COPD).
A hospital administrative professional, Mills found herself in dire straits while at work one day in August of 2015. During her lunch break, she headed to the emergency department.
That short trip would lead to a diagnosis that changed her life.
“One day at lunch, it was to the point where I thought I was drowning in my own body and I couldn’t breathe. So I went to emerg and I was fortunate that a retired nurse was working,” Mills recalled. “And she made the decision to do a chest x-ray and an EKG. That set the ball rolling then to see a cardiologist and have other testing done, which confirmed that I was in severe heart failure.”
‘I’m alive and I can live today’
Mills was also diagnosed with cardiomyopathy (disease of the heart muscle). Doctors also eventually determined she had sarcoidosis (an inflammatory disease) in her heart and lungs. Shocked and devastated, Mills began wondering what she’d done wrong. She exercised, ate well, and had no family history of heart disease.
Although she needs a heart transplant, the sarcoidosis makes that impossible. Mills now has a triple implant and a bedside heart monitor. She said she’s living her best life to the level she’s able, and has an electric bike she calls her “lifesaver” that helps keep her mobile and active.
“I wake up every day and I’m like, ‘I’m alive and I can live today.’ I don’t make plans for six months from now,” Mills said. “Instead I make plans for a day or two, and I follow those plans.”
In the years since her diagnosis, Mills has advocated for and helped many other patients in similar situations. While she doesn’t dwell on it, she finds herself wondering how different her outcome might have been if she’d been more aware of the signs and symptoms and received treatment sooner than three and a half months after she first felt congested.
“Going from a normal, active life, being healthy and not having a health issue to shortness of breath in a very short amount of time. Fatigue. Severe wheezing when I was breathing that would keep my husband up at night,” Mills said.
“And the feeling of drowning, of not having enough space in your lungs to breathe and get the air in to feel comfortable to walk. Knowing about the signs now, I wish I’d been a better advocate for myself than to just listen to someone tell you everything looked fine. Because I did not feel fine.”
What we don’t know can hurt us
When it comes to the signs and symptoms of heart disease and stroke, the Heart and Stroke Foundation of Canada says what we don’t know can hurt us.
In a new poll released Wednesday, the national non-profit found that many Canadians don’t know enough about heart disease and stroke. From risk factors, signs and symptoms to what to do if faced with a serious medical emergency, the organization said more needs to be done to raise public awareness.
According to the poll carried out for the organization by Environics Research Group, seven in 10 Canadians don’t know the risk factors for heart disease and stroke.
“They mistakenly think that family history/genetics is the biggest risk factor for heart disease and stroke,” a news release said.
“The reality is high blood pressure is the number one risk factor for stroke and a major risk factor for heart disease, and up to 80% of premature heart disease and stroke can be prevented.”
The poll also found one in three Canadians don’t understand that a cardiac arrest and a heart attack are different conditions. One in three remain unaware that the signs of a heart attack can present differently in women, while another one in three don’t know that most people who experience a cardiac arrest outside of a hospital don’t survive.
It also found that more than four in 10 Canadians don’t understand what heart failure means.
The poll also found that one in two Canadians have been personally impacted by cardiovascular disease because they or a family member or friend has experienced it. Heart disease and stroke are the second leading cause of death in Canada, and more than 3.5 million people are living with these conditions.
Heart disease starts at school age
“It was really striking how little patients really did know about heart and stroke and the lack of understanding out there,” QEII Health Sciences Centre cardiologist Dr. Ratika Parkash said about the poll results in an interview on Tuesday.
“As a health care professional, you think that people know the differences between, for example, a cardiac arrest and a heart attack. But really they don’t. The knowledge base is really something that we need to work on. That was the most striking thing that came out at me.”
Parkash believes the knowledge gap stems in part from the fact we don’t spend much time on education around cardiovascular disease. She said it should begin while children are still in elementary school. Things like exercise, proper nutrition, and monitoring and controlling blood pressure and cholesterol are all key pieces in helping prevent cardiovascular disease.
“Heart disease starts at the school age. That’s when we start building plaques in our arteries that cause heart attacks. It’s at the age of 11. We’ve known that for a long time, so we really do need to start talking about these things at very early ages,” Parkash said.
“It just hasn’t filtered down into the system to make heart disease a focus for children. We talk a lot about exercise…But we need to start talking more about eating fruits and vegetables. We need to start talking more about what is a heart attack and how it’s different from heart failure and stroke and so on.”
Warning signs
Most of the patients Parkash sees have already experienced a cardiac-related event. They consistently ask her how to prevent them from recurring. Her hope is that greater awareness can prevent many of these incidents from happening in the first place.
“A lot of people do have the warning signs. The warning signs are changing symptoms when you’re doing exercise. That’s why exercise is so important, because if you don’t do any exercise, you may not get any of those warning signs,” Parkash explained.
“The warning signs are shortness of breath or chest tightness. You’re not feeling well, making you need to stop your exercise…If there’s a change in your exercise tolerance, that can signal a problem with your heart. So those are the warning signs that patients need to pay attention to.”
She also pointed to feeling light-headed or like you’re going to faint with exercise as signs to pay attention to and to seek help.
“But if you don’t exercise, then you’re not going to recognize those things,” Parkash said. “If everybody just walks every day, then we can pick up some of these things earlier.”
We also need to do better when it comes to educating women about how heart attacks often appear differently in them, Parkash said. She said many women also remain unaware that when they’re post-menopausal, their heart attack risk becomes “essentially the same as men.”
‘Don’t drive yourself to hospital’
Overall, Parkash said the key messaging for everyone is to engage in preventive behaviours, and to pay attention to symptoms and warning signs for stroke, heart disease, and for emergency signs of heart attack or cardiac arrest.
“And don’t drive yourself to the hospital. A lot of patients drive themselves to the hospital and you’re just thankful they actually made it,” Parkash said.
“So call 911 when you have those symptoms. Don’t be the soul that says, ‘Well, I’m going to save the health care system some money.’ That’s not the time to be saving money for the health care system.”
Other findings from the Heart and Stroke Foundation poll:
Almost 1 in 3 Canadians mistakenly think if they witness someone having a stroke they should immediately drive them to the nearest hospital as quickly as possible. If someone has a stroke, immediately call 911.
1 in 3 Canadians do not know that most people who have a stroke are left with some level of stroke-related disability. About 60% of people who have had a stroke are left with some level of stroke-related disability. More than 40% of people who have a stroke are left with moderate to severe disability. Effects of stroke can be both physical and mental.
1 in 3 Canadians think it is difficult to recognize the signs of stroke if you’re not a trained health care professional. But everyone can learn the signs of stroke. FAST is an easy way to remember the most common signs. FAST stands for Face — is it drooping? Arms — can you raise both? Speech — is it slurred or jumbled? And Time — to call 911 right away.
More than 4 in 10 Canadians do not understand heart failure. They think heart failure means your heart suddenly stops. But it actually means your heart is not functioning as it should or that there is a problem with its structure.
More than 1 in 4 Canadians mistakenly think that most children with congenital heart disease die before they are 18. Because of medical advances in Canada and around the world, 90% of children with congenital heart disease (a condition present at birth) survive to adulthood.
WOW !! Scary story.