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diagnosed with heart failure: managing symptoms, finding support and getting the right treatment plan

if left untreated, severe heart failure can require hospitalization on a ventilator or for surgery for blocked arteries or heart valve repair. heart failure is among the top reasons for hospitalization in canada.

by karen hawthorne
published oct 10, 2024
read time 8 minute read
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read time 8 minute read
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the main signs of heart failure she looks for when a patient comes into her clinic are shortness of breath on exertion, swelling in the ankles, difficulty breathing when they lie flat, or waking up in the middle of the night suddenly short of breath and needing to sit up on the side of the bed. getty images
heart failure isn’t a one-time acute event that you recover from. it’s a chronic disease that can get worse. it happens when your heart becomes too weak or stiff to pump the blood your body needs to survive. here’s the sobering fact: anything that damages your heart will affect how it functions, like high blood pressure, valvular heart disease where heart valves have either become too stiff or too leaky, heart attacks, diabetes and obesity. (there’s a lengthy list.) these can all lead to heart failure, which gives you an idea of how it’s become a growing problem – as more people survive heart attacks and as rates of high blood pressure, diabetes and obesity keep rising, heart failure rates will also skyrocket. right now, an estimated 750,000 canadians are living with heart failure and about 100,000 people are diagnosed with heart failure each year, according to the heart and stroke foundation. it’s the most rapidly rising cardiovascular disease in canada. nearly half of people with heart failure will die within five years of diagnosis.
still, people don’t always understand the term “heart failure” or know the symptoms.
“a lot of patients will hear the term at the diagnosis and think that the heart has failed completely or is not working at all. so, the way i describe it to my patients is that heart failure is a syndrome,” says dr. mali worme, heart failure cardiologist at the university health network’s peter munk cardiac centre in toronto.

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“your heart isn’t able to fill adequately with blood or to inject adequately the blood to carry oxygen throughout all the blood vessels of your body to all your vital organs,” she explains of the pumping problem. when you don’t get sufficient blood and oxygen supply to your other organs, you’ll experience tissue and organ damage, like kidney failure with vague early symptoms that can be nausea and fatigue, and liver congestion that can bring on abdominal pain.
here’s how you can manage heart failure before and after a diagnosis.

know the signs and symptoms

what symptoms should you look for? because the sooner early heart failure is detected, the better chance for successful treatment and extending your life.
common signs of heart failure include shortness of breath, coughing or wheezing, swelling in the legs and ankles, swelling of the belly, or arrhythmias where your heart is beating too fast or too slow. the more severe and advanced the disease, the more limiting the complications.
“with a diagnosis of heart failure, most patients are surprised that their heart is the cause of their shortness of breath. most people think it’s a problem with their lungs,” says worme of misconceptions and uncertainty about heart failure and what it means.
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when your heart is not pumping sufficiently with each beat, two things can happen: one is that more blood is left in the heart than is supposed to be there because you’re not ejecting it, so more blood pools in the left side of the heart. over time the pressure from that extra blood starts to affect the lungs causing fluid buildup. “patients notice that they’re more short of breath when they lie down and they have to prop up on more pillows at night.”
the right side of the heart is also impacted, leading to increased pressure in the veins and fluid leaking into the tissues. with gravity, the leaking fluid shows up as swelling in the ankles and legs.
the second scenario is symptoms related to a lower ejection of blood with each heartbeat. this means you can have shortness of breath because your body is not getting sufficient oxygen to carry out its physical activity. as well, there’s often significant fatigue much sooner during exercise, worme adds, noting that heart failure can be complicated and missed by healthcare providers. “fatigue is a hard one because there’s a hundred conditions that can lead to fatigue. if it’s quite prominent, we’ll notice reduced cognitive function or feeling more mentally fatigued. but again, that’s very non-specific.”
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the main signs of heart failure she looks for when a patient comes into her clinic are shortness of breath on exertion, swelling in the ankles, difficulty breathing when they lie flat, or waking up in the middle of the night suddenly short of breath and needing to sit up on the side of the bed.
while heart failure is more common in older people, it can happen in kids, teens and adults of all ages. again, it’s linked with obesity, diabetes and high blood pressure that are huge concerns across all age groups. smoking and alcohol use are other factors that put you at higher risk.
getting informed about your diagnosis is an important first step. peter munk cardiac centre has an online heart hub with extensive resources and the heart and stroke foundation is another go-to resource for information and guidance.

connect with your care team

there is no cure for heart failure, but early diagnosis and treatment can improve your quality of life and life expectancy. like many chronic diseases, the experience and constellation of symptoms is unique to the individual. some people live with severe symptoms and unpredictable downturns, while others have mild symptoms that can be well managed. in both cases, earlier diagnosis makes a difference.
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see a doctor if you notice anything out of the ordinary for a physical exam and health screening for diabetes and high cholesterol. the doctor may order possible heart tests or blood test to detect heart failure biomarkers. high blood pressure, a significant risk factor, can be self-monitored and then checked regularly by a doctor. patients with heart failure usually are referred to a cardiologist for ongoing treatment and monitoring.
there’s no single path to healing, so intervention is tailored to the individual. prescribed medications for heart failure can include a combination of angiotensin-converting enzyme inhibitors (ace inhibitors), angiotensin-2 receptor blockers (arbs) to help your heart pump better, and dilate and relax your blood vessels, and beta blockers that lower the workload on your heart, help prevent stress hormones from making your heart failure worse and keep your heart rhythm normal. diuretics can be prescribed to help get rid of the excess fluid in your body and improve your breathing.
working with your care team is critical. if left untreated, severe heart failure can require hospitalization on a ventilator or for surgery for blocked arteries or heart valve repair. heart failure is among the top reasons for hospitalization in canada.
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worme says that getting patients on medications, starting with a high dose to determine effectiveness, gives them the best chance of their weakened heart muscle improving in terms of its strength, and gives them the best chance of feeling better, prolonging their life and staying out of hospital. medications are a life-long course of treatment.
“when the heart function improves, pulling those drugs away and giving patients a drug holiday is not recommended,” she adds. “the evidence really suggests that those patients are at much higher risk of ending up in heart failure again and having their heart muscles get weaker. if the heart gets weak again after having recovered, it can be much more difficult to normalize its function.”
it’s key to work with your specialist to get the treatment adjusted as needed over time. for worme, one of the most rewarding parts of her work is the relationships with patients and their families she builds along the way.
“it’s a special relationship when you diagnose someone with heart failure and then you’re seeing these patients every month to titrate their medications or check their blood work. many of them are with you for a very long time.”

find support and resources

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reaching out to professional organizations for help, like the heart and stroke foundation can ease feelings of isolation and fear about how to manage your day-to-day with heart failure. the emotional and physical toll can lead to mental health disorders like depression and anxiety.
“some people feel cast adrift and very alone after they learn of their condition,” gavin arthur, a senior manager of program recovery at the foundation, notes on the charity’s website. his team launched a facebook group to connect canadians who have heart failure. “we’re helping connect people living with the disease and creating an environment where people can share their stories and support each other. strengthening social and emotional connections is an important aspect of taking control and experiencing a better quality of life.”
patients can also connect with a social worker through their heart clinic to be referred to support groups or professional counselling for therapy. some patients will also need caregiving, depending on their circumstances, so finding support and information through expert organizations like the heart and stroke foundation makes the learning curve to navigating heart failure easier.
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consider lifestyle adjustments

steps to prevent heart failure can also help improve managing your symptoms. medication therapy and regular check-ins with your doctor are a big part, but there’s also growing evidence that lifestyle habits can have a huge impact.
“some patients are referred to cardiac rehab which is a guided exercise program to help get patients moving,” worme explains. “and we give them advice on heart healthy eating.”
regular physical activity, not smoking, managing stress, getting good sleep are all connected to heart health. diet patterns and heart failure research studied by university of california researchers, published in nutrients in december 2021 landed on the dash diet – dietary approached to stop hypertension – as showing the most positive effect (although more research is called for). the plan, developed in the late 1990s, limits salt, sugar and saturated fat, and emphasizes fruits, vegetables, whole grains and low-fat dairy.
but it’s a multifaceted lifestyle approach that works best, combining diet, exercise and pharmacological therapy for improved heart failure outcomes.
“as we start seeing more and more increase in bmi (body mass index) and increase in weight in our population on average, we’re seeing an increase in cardiovascular risk factors and patients at higher risk of all types of heart disease, and certainly heart failure,” says worme.
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but making changes to lifestyle doesn’t have to be an all-or-nothing approach, whether it’s eating more plant foods or getting outside for a walk, she stresses:
“even small amounts of physical activity help, like brisk walking for 15 minutes a day. and that’s going to not only protect your heart, but i”s reducing your chances of high blood pressure. it’s getting your cholesterol down, and it’s reducing your chances of type 2 diabetes.”
karen hawthorne
karen hawthorne

karen hawthorne worked for six years as a digital editor for the national post, contributing articles on health, business, culture and travel for affiliated newspapers across canada. she now writes from her home office in toronto and takes breaks to bounce with her son on the backyard trampoline and walk bingo, her bull terrier.

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