powered by:
uhn foundation
diagnosed with heart disease: understanding risks, finding support and getting the right treatment plan
6 minute read
the three resources people with heart disease need most are healthcare providers, community support programs and then your peer network, which could be your family, friends, caregivers and other people who have gone through similar experiences.
getty images
stay up to date on this topic
only half of canadians know their own risk factors for heart disease, according to polling by heart & stroke, so a diagnosis can be a shock. research shows that 80 per cent of premature heart disease can be prevented by behaviours: healthy eating, physical activity, not smoking and knowing blood pressure and cholesterol numbers (and keeping them in the normal range).
still, more than six million canadians are living with heart disease and stroke. as statistics canada reports, heart disease is the second leading cause of death in canada, accounting for more than 55,000 deaths each year.
when you have a diagnosis of heart disease—which can happen at any age—take action. the most common type is ischemic heart disease, characterized by narrowed arteries from the buildup of plaque, a mix of fats, calcium and cholesterol. it can lead to heart attack, irregular heart rhythms, heart failure or chest pain.
connect with your care team
“it’s a lot of information given to people all at once, and sometimes in an unexpected situation, so it can be quite overwhelming,” says amanda nash, the lived experience engagement and support manager at heart & stroke. she’s a dietitian by training and instrumental in awareness and outreach initiatives at the national charity to help people navigate care.
advertisement
“people can’t absorb all that information, and you can feel a little bit lost in your diagnosis. but your healthcare team is really the go-to for help and understanding,” she advises.
your team doesn’t just include physicians, but also a range of professionals, including nurses, community pharmacists, social workers and other allied health professionals, involved in your multidisciplinary care.
after a diagnosis with a specialist or at the hospital after a heart-related event, nash also suggests seeing your family doctor or nurse practitioner within one or two weeks to get the full picture of what’s happening. that person has the most understanding and knowledge around your current lifestyle, conditions and state of your health.
they’re the point person to discuss your condition, your medications and your treatment options, she says. “they’ll talk about what’s required for monitoring, what symptoms you need to watch for, and when you need to reach out to seek care for those symptoms.”
for someone who’s living with heart failure—a chronic condition where the heart muscle isn’t able to pump enough blood to supply blood and oxygen to the body—they’re going to benefit from coordinated care, regular monitoring, medication management and education on symptom recognition, and then a referral to cardiac rehabilitation.
advertisement
for someone who has congenital heart disease—from heart structure and function defects at birth—they’re going to require lifelong follow-up care from specialized heart clinics, like pediatric congenital heart clinics and adult congenital heart clinics, once they’ve transitioned to adult care.
heart & stroke has brought together leading organizations from across the country to drive national action plans for heart failure and congenital heart disease. the aim is to provide clear pathways for coordinated care, specialized clinics and access to these clinics across canada, so that people get the right care at the right time and improve their quality of life.
find heart disease support and resources
for people without a family doctor, nash advises contacting 811 or your provincial health contact centre to connect you with a program that can help you find a family physician in your area. these support centres are staffed by nurses who can give you some guidance related to your specific condition, connect you with that family practitioner, but then also look at what other opportunities are available within your community.
as well, every province has 211, which will connect you to community and social supports. (you can also text or email.)
advertisement
“it’s very normal after diagnosis that you’ll have a lot of different emotions. and if you’re having a hard time managing some of those emotions, your fear, your anxiety, for example, 2-1-1 can connect you to different programs that are available for food services to get meals delivered or home care or any sort of community or social program.”
nash explains that the three resources people with heart disease, or other serious health conditions, need most are healthcare providers, community support programs and then your peer network, which could be your family and friends, your caregivers, but also other people who have gone through similar experiences to help you to understand and navigate your new normal.
“so the first step is looking at those friends, families and caregivers, inviting them in to support you, having them be part of your appointments, letting them understand the lifestyle changes you’re going through and your emotional state. but going a little bit deeper, when we look at that peer network, so talking to people who have gone through similar experiences, we know that peer support has proven to help with emotional well-being. it provides reassurance and motivation. it gives you a sense of belonging and connection, and it leads to overall healthier habits.”
advertisement
heart & stroke offers two peer-based networks, the community of survivors and care supporters’ community, operated through a facebook platform. the first is for people with lived experience of heart conditions, while the other offers social and emotional support for caregivers, both in a safe, respectful environment that is moderated by the organization.
“this allows peers to connect with peers, to ask questions, to share experiences, to help navigate the different bumps along their journey.” in addition, communities have in-person or virtual face-to-face programs to join, again through asking your healthcare team or the 211 provincial service.
self-management is key with heart disease
after a new diagnosis or a heart event, the main hurdle is adjusting to your new normal, nash says. “we get a lot of people calling or reaching out to ask about how to navigate that new normal. it might mean adjusting to new medication routines, maybe side effects from those medications, adjusting to new lifestyle changes, understanding what your options are and what’s available to you. and i think one really important message is just to be kind to yourself and allow yourself time to adjust.”
advertisement
helpful tips to make the adjustment easier include writing things down to learn about your condition and your experience of symptoms. take notes when you talk to your healthcare team or your healthcare providers, writing down their comments and suggestions. write down your medications and any routine changes.
also, keep track of questions that you have that come up after the fact as well, so you’re prepared to ask questions at your next healthcare appointment.
heart & stroke offers a free risk screen tool to help people understand their risks and to support them in taking action to improve their health.
“the good news is that medical risk factors like hypertension, cholesterol, diabetes, if they are managed with the tools in your toolbox like lifestyle and medication, then it does put your risk down again. so it’s only when they’re not managed well that it does increase your risk,” nash notes. “once you’ve had a stroke, for example, you are going to be at a higher risk to have another stroke.”
the risk screen tool takes about seven minutes to fill out the questionnaire, and then you’ll receive a personalized profile of your risk factors.
participate in cardiac rehab
cardiac rehabilitation programs are structured to offer recovery, education, support for lifestyle changes and emotional well-being. they include exercise, education and counselling with medical professionals. these programs provide you with tools and tips, guided by your medical professional, and allow you to connect with others who are going through the same experience in real time.
advertisement
depending on access and your location, many cardiac rehab programs offer a virtual component that lets you connect by phone or video for the same support in a different way. for people in rural areas, for example, they can benefit from these education opportunities and physical activity in their own home environment or in their local recreation centre.
the important takeaway here is that cardiac rehabilitation won’t change your past, but it can improve your future. supervised therapy builds cardiovascular fitness, muscle strength and lung capacity that make daily activities easier and prevent your condition from getting worse. again, self-management plays a big part in your heart health going forward.
share story
