Patient Journey Map
Capturing real experiences to empower a global community living with and caring for heart diseases leading to heart failure.
Opening Words
Dr. Jillianne Code,co-founder of HeartLife
Meet the team →
Marc Bains,co-founder of HeartLife
Meet the team →
HeartLife’s Mission is to transform the quality of care, for people living with heart failure. We do it by engaging, educating, empowering a global community to create lasting solutions and build healthier lives.
Why does the patient journey map exist?
The journey map was initiated to fully understand the burden of heart failure and develop real-world solutions based on the lived experiences of heart failure patients and their family caregivers. It will be used to improve the understanding of heart failure across the care continuum, facilitate discussions with various stakeholders to drive change, and facilitate solutions for those living with heart failure.
How can one manage heart failure conditions?
While we don’t yet have a cure for heart failure; Medical therapies, lifestyle changes, and support can help people manage their condition well and live a high quality life that they deserve.
This initiative is dedicated to:
- Canadians living with Heart Failure
- Healthcare professionals who dedicate their lives to caring for others
- Our amazing support network of family and friends
- And the entire HeartLife Community
We will not stop until we realize a better everyday life for people living with heart failure; because it’s about life, not failure.
Jillianne Code & Marc Bains
Founders of HeartLife Foundation
Real stories from HeartLife community members and partners
The Invisible Warning
Anyone can be diagnosed with heart failure, no matter your age or physical fitness. Early warning signs are frequently subtle, insidious, and misdiagnosed as getting older, work burnout, or a stubborn cold.
Six Early Warning Signs
Common signs patients experience before diagnosis that warrant clinical investigation:
Shortness of Breath
Dyspnea upon exertion or lying flatDifficulty breathing when climbing stairs, walking short distances, or sleeping without multiple pillows.
“I thought I was just getting out of shape. Suddenly, walking from the couch to the kitchen left me gasping.”
Profound Fatigue
Exhaustion that rest does not cureA constant feeling of depleted energy where even basic everyday routines feel overwhelming.
“It wasn’t normal tiredness. I woke up drained and could barely get through morning meetings.”
Swelling & Bloating
Fluid retention in feet, ankles, abdomenShoes suddenly feel tight, socks leave deep rings, and unexplained weight gain appears within days.
“My ankles swelled up like balloons over a single weekend. My shoes simply wouldn’t fit.”
Cold Hands & Feet
Impaired peripheral circulationThe body diverts blood toward core vital organs, leaving extremities ice-cold and pale or grey.
“My hands and feet were constantly freezing, and my complexion had turned an unnatural grey tone.”
Chest Discomfort & Burning
Atypical pressure or burning sensationFullness, tightness, or burning sensations frequently misdiagnosed as acid reflux or muscle strain.
“Doctors thought it was indigestion or stress. I had to push for a specialist evaluation.”
Racing Heart & Palpitations
Tachycardia and arrhythmiasHeart beating uncontrollably fast, fluttering, or skipping beats even while completely at rest.
“My heart was racing non-stop for over eight hours before I rushed to the hospital emergency.”
Diverse Paths into Heart Failure
Everyone has a unique story leading into diagnosis. Select an archetype to explore real pathways documented in the journey map:
Fresh Graduate Excited to Travel & Start Life
Had just graduated university and was packing for travel and starting a first career. Suddenly noticed hands and feet turned ice cold, severe shortness of breath climbing stairs, and zero stamina. After initial delays, hospital blood tests and an echo confirmed acute heart failure.
“People assume heart failure only strikes seniors. I was 22, just starting my adult life, and terrified.”
Heart Disease & Connected Conditions
Did you know heart failure often develops alongside connected conditions like Amyloidosis, Diabetes, Atherosclerotic Cardiovascular Disease (ASCVD), or Hypertrophic Cardiomyopathy (HCM)? Early identification of connected conditions is vital to preserving cardiac function.
The Turning Point
The moment of diagnosis is the toughest turning point in someone's life. Receiving a diagnosis triggers an intense emotional spectrum - shock, numbness, and fear - followed by the daunting task of understanding medical jargon.
Shock & Denial
“This cannot be happening to me.” An immediate feeling of grief for one's former life, fear of the unknown, and anxiety over family, finances, and mortality.
- Overwhelmed by unfamiliar clinical terminology
- Difficulty processing information given in the emergency or hospital room
- Feelings of isolation and helplessness
Relief & Validation
Finally having a name for symptoms that were previously dismissed. Relief that the exhaustion was real, and that a concrete medical care plan can now begin.
- Validation that symptoms were not "in your head"
- Access to guideline therapies that protect and heal heart muscle
- The first step toward proactive self-management and hope
The Hospital-to-Home Transition
What happens when you leave the hospital doors? HeartLife bridges the critical gap between inpatient discharge and lifelong outpatient living:
Confusion at the Hospital Doors
- Discharged with a handful of complex prescriptions without clear explanations of side effects
- Unclear dietary guidelines (e.g. what does 2,000 mg of sodium actually look like?)
- Uncertainty about which warning signs require immediate emergency action vs clinic visits
- Feeling completely abandoned and alone once back in your living room
An Informed & Supported Launchpad
- The Patient Passport: Plain-language medication tracking and clinical history ready for every visit
- Daily Weight Guidelines: Concrete action steps when weight fluctuates by >2 lbs overnight
- HeartLife Academy: Visual video modules explaining Ejection Fraction and guideline medical therapy
- Peer Community Lifeline: Immediate invitation to connect with fellow heart failure patients
HeartLife Academy & Clinic Toolkits
We translate complex cardiology into clear, empowering knowledge. Watch modules on understanding your echocardiogram, managing medications, and preparing for doctor consultations.
The Everyday Continuum
It’s about life, not failure. Being diagnosed with heart failure doesn’t mean life is over. It means an intentional adaptation to daily activities, monitoring your body, and discovering that a rich, fulfilling life is entirely possible.
Good Days, Bad Days & Rest Days
Living with heart failure is an up-and-down journey. One of the greatest lessons patients shared is learning to embrace that:
Recharging Your Cardiac Battery
A rest day is not a defeat or a failure. It is an intentional, proactive health strategy. Pacing yourself prevents symptom flares and allows heart tissue and physical stamina to regenerate.
Five Pillars of Long-Term Care
Explore the core dimensions of daily life captured from patient and caregiver interviews:
Lifestyle Adaptation & Daily Rhythms
“Rest days are not bad days - they are part of the journey.”
Being diagnosed with heart failure doesn’t mean life is over. It means learning your body’s unique rhythms, respecting energy limits, and celebrating the good days.
- Distinguish between a "Good Day", a "Bad Day", and a "Rest Day" - pacing is a medical skill, not a weakness.
- Daily morning weigh-ins detect early fluid accumulation (2 lbs overnight or 5 lbs in a week) before symptoms escalate.
- Low-sodium nutrition (under 2,000 mg/day) and conscious fluid balance keep the heart from working overtime.
- Safe, guided physical activity (cardiac rehab) rebuilds endurance and cardiac efficiency.
The Continuum of Treatment
Heart failure care adapts over time. Modern clinical therapies provide a robust spectrum of intervention:
Medical Therapy (GDMT)
The four pillar medications that relax blood vessels, lower strain, and stabilize heart function.
Cardiac Devices
ICDs and CRT pacemakers protecting against sudden arrhythmias and coordinating heartbeats.
Surgical Interventions
Coronary stents and valve repairs restoring blood flow and easing cardiac workload.
Mechanical Support (LVAD)
Left Ventricular Assist Devices that take over blood pumping as a bridge or destination therapy.
Heart Transplantation
The ultimate gift of life, providing a renewed horizon for patients with end-stage failure.
Seven Themes for Positive Change
While conducting interviews across Canada, seven urgent themes emerged to educate, transform, and empower the heart failure community. Here is how HeartLife answers the call:
Mental Health Support Across the Journey
Emotional distress, panic, and depression are widespread among heart failure patients, yet mental health resources in cardiology clinics are almost non-existent.
How might we embed dedicated psychosocial support into routine cardiovascular care from the moment of diagnosis?
HeartLife advocates for integrated cardiac-psychology programs and hosts peer-led mental wellness check-ins for patients and caregivers across Canada.
Explore Join Our Community →Helping People Live the Life They Want
Patients strongly expressed that diagnosis is not the end - but they need practical guidance on work, intimacy, travel, and pursuing personal dreams.
How might we empower newly diagnosed patients with actionable lifestyle guidance to pursue their life goals?
HeartLife Academy provides structured, accessible learning modules co-designed with patients to navigate daily life, work, recreation, and family.
Explore Explore HeartLife Academy →Empathetic & Empowered Discharge
Patients experience immense confusion upon hospital discharge - leaving with complicated prescription bags and zero clarity on what happens next.
How might we create a standardized, compassionate transition plan from inpatient discharge to outpatient life?
HeartLife created the Patient Passport and Clinic Resources kits, distributed across Canadian hospitals to give patients clear instructions and questions for their first checkup.
Explore Clinic Toolkits →Equitable Access to Multidisciplinary Care
Optimal heart failure management requires cardiologists, nurses, pharmacists, dietitians, cardiac rehab, and mental health - yet access varies wildly by geography.
How might we ensure every Canadian has access to a dedicated multidisciplinary heart team regardless of postal code?
HeartLife authored the National Heart Failure Policy Framework to urge federal and provincial health ministers to fund multidisciplinary clinics nationwide.
Explore Policy Framework →Building Communities Around Heart Health
Isolation is the heaviest burden. Patients and caregivers are actively seeking safe spaces to learn, share, and connect with peers walking the same path.
How might we connect every diagnosed Canadian with a supportive peer community from day one?
HeartLife runs Canada’s largest bilingual peer support network on Facebook, hosts monthly virtual town halls, and coordinates regional patient meetups.
Explore Peer Networks →Transforming Healthcare Culture in Canada
Patients want to be heard and respected as equal partners in their care. Healthcare must shift from paternalistic instructions to collaborative dialogue.
How might we ensure lived experience directly shapes medical guidelines, research priorities, and healthcare delivery?
HeartLife spearheaded the Canadian Heart Failure Patient Charter, enshrining fundamental rights to timely diagnosis, shared decision-making, and dignity.
Explore The Patient Charter →Take Action with HeartLife
Whether you are living with heart failure, caring for a loved one, or providing healthcare, you are part of this movement:
Download Journey Map
Get the complete, beautifully illustrated 32-page Patient Journey Map publication to share with your healthcare team or clinic.
Join the Community
Connect with thousands of patients and caregivers across Canada in our supportive, peer-moderated English and French networks.
Read & Share Stories
Discover firsthand perspectives from people across Canada, or submit your own story to inspire others walking this path.
Support Our Mission
HeartLife is a registered patient-driven charity. Your contribution powers patient education, peer support, and systemic healthcare reform.