7 Tips for Traveling with Heart Failure

Being diagnosed with a chronic illness like heart failure instantly makes you think about the rest of your life. “How will this impact my family? Will I be able to do the things I love? Can I travel?” These are common questions that every heart failure patient has.

According to the Ted Rogers Centre For Heart Research, 60,000 new people are diagnosed with heart failure every year.

Despite this figure, heart failure is an illness that can be managed. This means you can still enjoy doing the things you love when you take some time to get organized and plan ahead. Living with heart failure shouldn't stop you from enjoying life and traveling to the places you always wanted to visit.

We’ve rounded up the following tips to help make things a little easier when traveling with heart failure.

Prepare in advance for air travel

Although oxygen levels are slightly lower on an airplane, air travel generally isn’t a problem for those with stable heart failure. However, your doctor may recommend supplemental oxygen for your flight if your symptoms have worsened recently. Make sure to contact the airline before booking your trip to ensure their policy allows for supplemental oxygen usage and make the necessary arrangements.


In-flight aids

Many travellers experience swollen ankles and muscle cramps as a result of sitting still for extended periods on an aircraft. To help reduce these effects and prevent blood clots, you can wear knee-high compression stockings during your flight. Walking around the cabin and stretching regularly can also help maintain continuous blood flow. Additionally, staying hydrated and avoiding alcohol are also helpful. 

Pack weather-suitable clothing

Your body should never get too hot or too cold because extreme changes in temperature can put undue stress on your heart. This is why you should pack the right clothing for the destination that you’ll be visiting. It also means you don’t have to worry about finding a store when you arrive. Think of packing light, loose, and comfortable clothing for hot destinations and warm layers for colder locations. You can also bring a hat for extra protection. Find out more about managing heart failure in the heat here. 

Medication coverage

When you’re travelling, it’s imperative to make sure that you have enough medication with you as delays can happen unexpectedly. You can ask your doctor to write a letter outlining what your medication is (plus the generic name), and the dosage. It’s important to carry your medication in your hand luggage so that you have it at hand when you need it to avoid any issues if your luggage is lost. You can contact the airline you’re flying with ahead of time to see if there are any rules regarding carrying medication. Once you arrive at your destination, you can set an alarm at the local time you would usually take your medication.

Maintaining your diet

It can be difficult to maintain your regular diet when you're travelling. To help limit any symptom changes, you can watch your salt intake, limit your alcohol consumption, and ensure you’re getting enough fluids. Eating regular nutritious meals can help ensure you get your recommended daily intake of fruit and vegetables. Doing a grocery shop and preparing your own meals and snacks whenever possible also helps.


Travel insurance

Securing travel insurance is one of the most vital things to do before you depart for your vacation. You can save a copy of your policy on your smartphone or print out a copy and keep it in your wallet. Discuss your travel insurance plan with a broker representative to make sure the policy you get covers any medical treatments that you may need and includes coverage for pre-existing conditions. It's also helpful to have a clear understanding of the steps you should take if you need emergency care during your vacation.

Emergency preparations

Preparing for emergency situations before you go traveling is key because you can never anticipate when something is going to happen. You can find out where the nearest hospital is to the location where you'll be staying, get a half page summary of your medical status from your cardiologist, and also have your doctor’s number in your smartphone if you need to make an emergency call. 

Everyone deserves a vacation to unwind, and those with heart failure are no exception. Although the experience may be different for each individual patient, planning is vital for a smooth transition and enjoyable holiday experience.


St. Paul’s Hospital celebrates 500 heart transplant surgeries in BC

Dr. Sean Virani (R), Head of Cardiology at Providence Health Care, with Marc Bains (L) and his wife, Jessica Bains. 

Dr. Sean Virani (R), Head of Cardiology at Providence Health Care, with Marc Bains (L) and his wife, Jessica Bains. 

On August 8, a special event took place at St. Paul’s Hospital in Vancouver to celebrate a major milestone – 500 heart transplants in British Columbia. Heart transplant recipients, the transplant care team at St. Paul’s Hospital, representatives from BC Transplant and Public Health Services Authority, and Health Minister Adrian Dix, joined together for the occasion.

The event also celebrated the 30th anniversary of the transplant program and marked a monumental occasion for the HeartLife Foundation’s co-founder and vice president, Marc Bains. Marc was the guest of honour at the event as he became the 500th heart transplant recipient in BC, in June 2018.

Marc lived with heart failure for 10 years and received his healthy heart after 10 months on the transplant wait list. Surgical director of the Cardiac Transplant Program of BC, Dr. Anson Cheung, performed the surgery which took place 30 years after the very first heart transplant procedure was performed in the province.

“I feel grateful to be part of this milestone. That moment when the newly transplanted heart begins to beat is something I never get tired of,” said Dr. Anson Cheung in a Providence Health Care News (PHC News) release.

Marc explained how, at 23 years old, his heart failure began with a simple cold which then progressed to the flu. “I had chest pains, I was exhausted, I was falling asleep at the kitchen table. Turns out my heart was functioning at only 10 to 15 percent of what it should be.”

Lifestyle changes and medical interventions allowed Marc to come off the heart transplant wait list and eventually establish the HeartLife Foundation with Jillianne Code, a two-time transplant survivor.

Then in 2017, Marc’s heart failure began to worsen, and he was put back on the heart transplant list.

"There were points where I thought I might not make it, but needless to say I always seemed to bounce back. I was ready for the heart, I was ready for the transplant and to move on to the next stage,” Marc told On The Coast's Gloria Macarenko.

Almost three months after the transplant surgery, Marc is looking forward to getting back to work, driving, and living his life to the fullest.

During his speech at St. Paul’s Hospital, Marc said: “I’m excited for the next stage of my life with my new beautiful and powerful heart. To my donor and donor family, thank you for the gift you have given me and my family. You have given me a second chance to live a full life, and I’ll be forever grateful for that.”

Over 1.2 million people living in BC have registered for the Organ Donor Registry, and more than 600 British Columbians are on the wait list for an organ transplant, according to a release from Providence Health Care.

Speaking to CBC News, Marc said: “I just want everyone to know that it's easy to become an organ donor. It's fast, it's simple and you could save a life." You can find out more about becoming a donor by visiting BC Transplant.

Listen to Marc’s full On The Coast interview here

Symptoms of Heart Failure and What to Look Out For


Heart failure is a serious condition which can affect anyone, however, it can be a difficult disease to diagnose since the symptoms may be subtle at times. “Symptoms may be variable depending on the underlying cause and severity of the patient’s heart failure,” said Sean A. Virani MD, MSc, MPH, FRCPC, FCCS.

Dr. Virani is an Associate Professor of Medicine at UBC, Senior Medical Advisor of Cardiac Services BC, President of the Canadian Heart Failure Society, and Medical Director at the HeartLife Foundation. He explains that there can be significant overlap between the symptoms of heart failure and other common cardiac and respiratory diseases.

“Not infrequently, heart failure will be incorrectly diagnosed as pneumonia, asthma or COPD (chronic obstructive lung disease) since the symptoms may be similar.”

Heart failure symptoms

Patients with heart failure will, in general, complain of shortness of breath, initially with exertion, but then progress to having “difficulty breathing, even at rest.”

Dr. Virani explains how, oftentimes, patients will be unable to lay flat in bed at night and will prop themselves up on pillows to help with labored breathing. Also, that some patients describe waking up in the night “to catch their breath”.

“Commonly, patients will note swelling in their legs and abdomen, which is due to fluid retention, and fatigue resulting from poor heart function.” Each heart failure case is unique, and the symptoms of heart failure may come and go over time, according to the Ted Rogers Centre For Heart Research.

The question presents itself; how long does it take for an individual who injures their heart to notice the symptoms of heart failure?

“There is no rule or best guestimate on the delay between developing dysfunction of the heart muscle and the onset of symptoms. Some patients may go years before experiencing symptoms, while others have symptoms right away,” said Dr. Virani.

“In general, the more severe the symptoms and the more functional impairment the individual experiences (i.e. inability to perform exercise, walk short distances or even care for themselves) the worse the prognosis for heart failure.”


Factors which contribute to diagnosis

Heart failure is very common. Every year, 50,000 new people are diagnosed with the chronic condition, according to the Ted Rogers Centre For Heart Research.

“The diagnosis of heart failure is primarily made on clinical grounds – that means that healthcare providers rely heavily on taking a history and performing a physical exam in order to make the diagnosis.” Dr. Virani notes that a comprehensive history and physical exam will also help the practitioner to identify the underlying cause for why a patient may have developed heart failure.

“Once the clinical diagnosis of heart failure is made, additional diagnostic testing may be used to confirm the diagnosis, provide insight on the cause of heart failure, identify the optimal treatment strategy and determine prognosis. This may include blood tests, an ultrasound of the heart which is also called an echocardiogram, an electrocardiogram (ECG), and in some cases an invasive test called an angiogram or heart catheterization.”

Heart failure has many causes or underlying risk factors. “The most common is damage to the heart muscle caused by a heart attack (myocardial infarction),” according to the Heart and Stroke Foundation.

High blood pressure can lead to heart failure if left undiagnosed and untreated for a long period. That’s why it’s important to get your blood pressure checked at least once every two years, or more often if your physician recommends you do so.

If heart failure is left untreated

“For all corners with heart failure, regardless of cause, symptom and disease severity, the average survival is 50% at 5 years. That means that 50% of patients will not be alive at five years if their disease is left untreated,” Dr. Virani added.

“Hospitalization is a major risk factor for mortality and this is why healthcare providers work hard to ensure patients don’t get hospitalized for their heart failure.” Despite this, more than 100,000 Canadians are hospitalized annually due to heart failure, according to the Ted Rogers Centre For Heart Research.

“In BC, approximately 12% of patients will be re-hospitalized for heart failure in 30-days and approximately 25% will be re-hospitalized at one year. After the first hospitalization, average survival drops to 30 months and after four hospitalizations, the average survival is only six months. Death and hospitalization can be significantly reduced with medication and adherence with lifestyle recommendations,” Dr. Virani concluded.

Always speak to a medical professional if you experience one or more of the common symptoms of heart failure.


Heart failure tools: Support groups and how they can benefit you


Heart failure is on the rise in Canada. It’s often the last stop for people who have experienced a journey through cardiovascular disease, according to a 2016 report on The Burden of Heart Failure, published by the Heart and Stroke Foundation.

Regardless of whether you’re aged 18 or 68 being diagnosed with heart failure and discovering that there is currently no cure for this chronic illness, is a shocking thing to hear. It can cause a mix of many different emotions as you start to envision the impact of this diagnosis on your life.

Heart failure is often misunderstood by the public, and this can make speaking out about the illness quite difficult for patients. In 2016, a poll by the Heart and Stroke Foundation revealed that “more than a quarter of Canadians believe that heart failure means your heart has completely stopped beating” and “one fifth mistakenly believe that it is a part of aging.” In fact, heart failure means your heart is damaged or weakened (failing), not failed, and it can affect people of all ages.

It’s normal to feel anxious

“Early diagnosis, lifestyle changes, and appropriate drug treatments can help you lead a normal and active life, stay out of hospital, and live longer,” as stated in the Heart and Stroke Foundation report. That’s the crucial thing to remember – heart failure can be managed. And you’re the most important person in managing your illness.

Nevertheless, it’s normal to feel stressed or anxious about how heart failure is going to affect you and your future. According to Health E-University’s Cardiac College, “feeling a loss of control can have the same effect on your heart as actually having the bad things that you fear happen.”

The Ted Rogers Centre for Heart Research notes that over time, as you “learn more about the condition [heart failure],” feelings of worry and anxiety will “subside.” However, if your “stress or worry seems out of control and is interfering with your daily life, you should speak to someone about it.”

Although you might feel like you want to be alone, getting support and help from others can be invaluable to helping you understand and manage your diagnosis.


Support groups

Talking to friends, family, and loved ones is an important part of living with heart failure. In addition, the emotional support gained from speaking to others with similar experiences can be very reassuring and helpful.

Depression and Heart Failure: Can Support Groups Reduce Depressive Symptoms?, an article by nurse practitioner, Estrella-Holder, published by the University of Manitoba’s Cardiac Sciences Program, states that support groups “may have beneficial effects in having members providing psychological support to each other.” It notes that members may improve their feelings of “wellbeing” and possibly “reduce depressive symptoms” by engaging with others in “similar situations.”

At the HeartLife Foundation, we run a closed, private support group on Facebook.

It’s a safe place for individuals living with heart failure, and their loved ones to ask questions, share information, and learn about the latest heart failure research. All members live with or have been impacted by heart failure and can talk freely about their experiences with others who understand.

We believe that a positive attitude, friendly support, and consistent encouragement, can help improve self-management of heart failure, which, in turn, can offer an improved quality of life.


Managing heart failure in the heat: 6 steps to help make things easier


Temperatures are soaring across Canada, and while we welcome the warmer days, it’s not always easy living with heart failure in high levels of heat and humidity. In fact, these conditions can make things incredibly dangerous for people with cardiovascular health problems. At present, there are approximately 600,000 Canadians living with heart failure, as reported by the Heart and Stroke Foundation.

“Your body shouldn’t get too hot (or too cold). If your temperature rises too far, the proteins that build your body and run virtually all of its chemical processes can stop working,” as stated in 2011 Harvard Health blog post titled: Heat is hard on the heart; simple precautions can ease the strain.

When you get too hot, your body tries to get rid of extra heat through radiation and evaporation, both of which stress your heart. Additionally, the rate of bodily "heat gain" is more than the rate of "heat loss" in hot environments, as reported by the Canadian Centre for Occupational Health & Safety. For most healthy people, dealing with these changes is manageable, but for those with heart failure, or those on the verge of it, hot, humid weather can be especially hard.

According to Patrick J. Skerrett, former executive editor at Harvard Health, the extra work that heat brings for the heart, “compounded by the loss of sodium, potassium, and the internal flood of stress hormones, can push some people into trouble.” For heart failure patients, this can be enough to cause “dizziness or falls” due to the “combination of increased blood flow to the skin and dehydration” which can drop blood pressure significantly lower.

In hot and humid workplaces, the “cooling of the body due to sweat evaporation is limited because the air cannot accept more moisture,” as noted by the Canadian Centre for Occupational Health & Safety.

This doesn’t mean that you can’t be exposed to heat or that you’ll never be able to go on a vacation in the sun again, rather, you can make some small changes to avoid any complications or “heat stroke” due to hot weather. To help you, we’ve compiled a list of six tips for managing heart failure in the heat.

Wear lighter clothing

Make sure you’re as comfortable as you can be when it comes to dressing for hot and humid weather – even if you’re not spending a lot of time outside. Loose, light, breathable clothing will help you feel more at ease and wearing a hat while outdoors can also help.

Reduce your physical activity

Take it easier when exercising in warmer weather and avoid putting any extra strain on your body. Early in the morning or later in the evening are often better times to exercise outside when the temperatures are not at peak.


Manage your fluid intake

The Heart and Stroke Foundation states that at least half of a heart failure patient’s daily fluid intake should be water. On hot days, you may want to increase your fluid intake to reduce your chances of overheating. If you’re on a fluid restriction, diuretics, or have bowel problems, this could make staying hydrated more difficult. Try freezing a 500 ml bottle of water overnight and sipping on it throughout the day if you have to limit fluids (DB Roberts, Pumping Marvelous). Caffeine-based drinks act as a diuretic so it’s best to try avoiding them.

Stay cool

One of the best ways to beat the heat is by breathing in chilled air. You can do this by spending time in the shade, taking a cool shower or bath, putting a wet cloth or ice pack under your arm, or setting your air conditioning to a cool mode if you have one. Spending time indoors and closing windows and blinds at home on hot days can also help.

Eat lighter meals

Avoid overloading your stomach in the heat by eating lighter meals such as salads, cold soups, and fruits. These options give you extra fluid while helping to satisfy your hunger. If, however, you’re on a fluid restriction, you could try sucking on ice cubes or frozen grapes, or perhaps using a mini water spray bottle.

Use caution with spa facilities

The use of spa facilities such as baths, saunas, jacuzzis, and steam rooms, is generally not recommended for heart patients. In hot weather it’s especially important not to expose yourself to sudden temperature changes between hot and cold pools. Always make sure to speak to your doctor before you use any such spa facilities.

Heat exhaustion symptoms include nausea or irritability, dizziness, muscle cramps, feeling faint, headaches, fatigue, thirst, heavy sweating, and a high body temperature, as outlined by the Canadian Centre for Occupational Health & Safety.

It’s crucial to seek medical attention immediately if you experience any of these symptoms.


Meet the HeartLife team and hear their experiences of heart failure (Video)

The HeartLife Foundation was established in 2016 when two heart failure patients determined that there needed to be a dedicated advocacy group, led by patients, for those living with the chronic illness. Those two patients are our founder and president, Jillianne Code, and our co-founder and vice president, Marc Bains.

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After a series of tests and misdiagnoses in Jillianne’s case, the initial shock of being told they had heart failure was felt by both. Marc’s first question to his doctor was: “Am I going to die?” And when Jillianne’s cardiologist said she knew what do to do about her diagnosis, her first feeling was “relief” – she was just 28 years old at the time. 

HeartLife member, Tracy Bawtinheimer, says her first assumption was that a “solution” would come with her diagnosis, and that she didn’t realize what “chronic” was until her disease “reoccurred, and reoccurred again.” 

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Living with heart failure doesn’t have to mean that you can’t do certain things like work out, play sports, or travel, but it does mean you have to do them differently. Marc notes how it limited his travelling, but he can now continue to go on trips once he knows that “an environment is safe” for him to visit and that medical services are within reach. 

“I used to commute to work by bike, pretty aggressively,” says Tracy. “Now, we ride on paths, take breaks, and enjoy the scenery.” Despite Jillianne’s diagnosis with heart failure, she fought on to continue her PhD studies, and even though she was getting work to do in her post-doc, she continued on to get her professorship.

Nick Zap, Jillianne’s husband, says that when it comes to living with heart failure, he and Jillianne fully “embraced” it. Although Jillianne had physical ailments, “there was nothing there stopping her from continuing on with life.” 

Jillianne says that when you’re diagnosed with heart failure, “you think your life is over.” But what it really does is teach you to “slow down”. Today, she calls living with heart failure a “new, extraordinary life.” 

“You have to be patient and find alternative solutions to what you want to do,” says Marc. “Embrace moving forward with what you’re doing, there’s going to be tweaks, there’s going to be tough times, but at the end of the day, you still need to live,” adds Nick. 

Marc reinforces the fact that there are resources out there, and that “there are people like you living with heart failure,” but you have to keep moving forward. He believes that in order to do that effectively, “we need to work together” and “strengthen our voice.” 

For Tracy, living well with heart failure means being active and finding a way to incorporate the things you love to do into your new life. “I think it’s really important to remember that you’re never alone in this. I’ve been fortunate to find the HeartLife Foundation, benefit from the online support group, and the information that they have to share,” Tracy concludes.

If you’re living with heart failure, or someone you love has this chronic illness, click here to visit our closed Facebook support group and join the conversation.

There’s no typical heart failure patient, these three Canadians have very different stories

Heart failure is the most rapidly rising cardiovascular disease in Canada, according to the Ted Rogers Centre for Heart Research. There are approximately one million Canadians living with heart failure. 

There’s a common misconception that those most likely to have heart failure are older. When in reality, heart failure affects people at every stage of life - from infants to retirees. 

There’s no single cause for the chronic illness and it can occur as a result of heart attacks, high blood pressure, heart valve disease, congenital heart defects, obesity, diabetes, kidney disease, genetics, a cold virus, or as a side effect of medications used to treat cancer and other inflammatory diseases, according to research conducted by the Ted Rogers Centre for Heart Research from 2015 to 2017. 

Today, we’re putting a spotlight on those directly affected by heart failure - the patients. We spoke with three inspiring individuals from different regions across Canada to hear their stories of when they first noticed symptoms, when they were diagnosed, and how they manage living with a chronic illness. 

Each story and experience of heart failure is unique, and we hope that you take something from reading them collectively. Whether it’s a greater understanding of the disease, valuing your independence, or why it’s wise to take action when you’re feeling that something isn’t right. 


Pegga’s story

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Towards the end of the summer in 2014, Vancouver resident Pegga de Albreit was experiencing flu-like symptoms. She was just 40 years old, and since she has seasonal asthma, two doctors dismissed her symptoms as nothing out of the ordinary. 

Pegga told us how her heart issues were masked by many factors that women suffer from as she was menopausal and on an endometriosis diet at the time. She experienced symptoms like shortness of breath, severe fatigue, palpitations, perspiration, weight loss, coughing, racing heartbeats, dizziness, as well as a loss of appetite. Then, on November 29th, 2014 Pegga was diagnosed with heart failure. 

“Heart failure is terrible. It affects my life badly in so many aspects,” said Pegga. In 2016, she had to get a hysterectomy because the anticoagulant she was taking made her bleed heavily. “I suffered excruciating pain that landed me in hospital almost every month during menses, I had to modify my lifestyle and activities.” 

Exercise is limited to walking and swimming for Pegga as she can’t tolerate extreme heat and extreme cold, she has a hard time breathing, and feels tired easily. “I cannot get emotionally, physically, and psychologically stressed. I feel as if my heart is being squeezed, I feel dizzy, and have chest pain.” She notes how she got depressed, felt isolated, and lost her independence with heart failure. 

“It is a sad life, especially because it is invisible, and a heart failure sufferer can look ‘fabulous’ because most of us have no physical evidence that we are sick. I don’t hang out with people I don’t know well because if I tell them I can’t keep up, they’ll look at me as if I am some kind of weird person or not cool company.” 

To help manage living with heart failure, Pegga takes naps in between daily activities, limits her salt and fluid intake as recommended by her cardiologist, and maintains a Mediterranean pyramid concept diet. She listens to her body when it needs rest and thinks positively. 

“I have a support group on Facebook that have heart failure and other heart conditions. I live one day at a time. I learned to focus on my abilities rather than my disabilities. I live in my own world, not driven by consumerism; I am minimalist that brings me joy to live with less,” added Pegga.

Kevin’s story

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At just 28 years old, Ontario-based Kevin Powers began to experience raspy breathing when he was laying down, as well as constantly feeling tired, as though he wasn’t sleeping enough. When he sought medical help, he was initially misdiagnosed with having asthma and given an inhaler to help with his breathing. 

After just one month, he was admitted back to hospital with suspicion of pneumonia. “The doctor on staff wasn't happy and I was sent for a CT scan and echo cardiogram. That's when the fluid was discovered around my heart. The cardiologist saw me two days later,” stated Kevin. 

On November 2nd, 2006 the first day that Kevin had seen a cardiologist, he was diagnosed with heart failure. This is a moment he can still remember clearly. Fast-forward to 2018 and Kevin finds that in many ways, he’s not limited in living with heart failure. 

“My EF is at 35% and I now have an ICD (implanted cardioverter defibrillator). I find stairs are still a little rough on me, if I'm going more than a floor at a time.” EF stands for Ejection Fraction, which is a measure of how efficiently the heart is pumping blood. A normal ejection fraction is typically between 55 to 70%, according to the Canadian Heart Failure Network.

Kevin also notes that his three-year-old both helps him manage living with heart failure and allows him to notice his illness a lot more: “Keeping up with him tires me out the most.” Although he explained how he has had some low days, Kevin takes living with his illness one day at a time and has adopted several mottos.

These are some of the inspirational sayings that help lift him up; “do not go gentle into that good night”, “today is the last day of your life, so far", “I've survived damn near everything.” 

“It's not a life sentence, and you can continue to live a full life with heart failure,” said Kevin.


Jackie’s story

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When Winnipeg resident Jarmila (Jackie) Ratz was 24 years old, she was diagnosed with non-Hodgkin lymphoma. She had a tumour in her chest that was putting pressure on 25% of her heart and it was six rounds of CHOP chemotherapy treatment over nine months, followed by daily radiation for 30 days, that got her through it. 

Then, when Jackie was 45, she woke up one morning with what she thought was the flu, accompanied by brutal fatigue, shortness of breath, and fluid retention. 

A couple of weeks later at her annual physical exam, an EKG (electrocardiogram – a test that checks heart function by measuring its electrical activity) revealed that she had suffered a cardiac event. This led to a cardiologist appointment and eventually her diagnosis of heart failure in 2016, when she was 48.

“When I was diagnosed with heart failure I did not have any symptoms that I was aware of, my diagnosis came as a surprise to me,” said Jackie. 

She had fatigue and heart palpitations as part of her diagnosis with chemo-induced cardiomyopathy, but she had follow-ups for 10 years after the chemo and there were no indications that she had suffered any damaging effects to her heart. However, Jackie lost her fertility as a result of the chemotherapy treatments.

Heart failure has affected many areas of Jackie’s life. She has a Cardiac Resynchronization Therapy Defibrillator (CRT-D) that’s integral to her care as it sends electrical impulses to both lower chambers of her heart to help them beat together, in a more synchronized pattern. She can no longer work and has been on long-term disability since earlier this year. She notes how her chronic illness has aggravated her personal life, as she doesn’t have the capacity and energy to participate or host events like she used to. “It has affected the amount of travel my husband and I get to do,” she added.

Yet despite her illness, Jackie has discovered a passion for advocacy and has shifted her energy to trying to improve processes and systems for care in Manitoba.


We asked each of our interviewees what advice they would give to someone who is worried that they may be experiencing symptoms of heart failure. If that individual is you, these three perspectives may help you in taking the next step that could be crucial to your health. 

Pegga: “See your GP, advocate for yourself; tell the doctor what your feelings are, describe symptoms exactly how they feel. Please do not rely on Google - it would never help you. Especially for women, we blame our discomforts to menopause, raising children, or ‘just being tired’. When you feel your heart is racing, get it investigated further. Please don’t ignore anything that relates to your heart, if I got treated earlier, my heart failure would not have been severe. I went on for months with arrhythmia (atrial fibrillation) and that caused cardiomyopathy, then heart failure. Now, I have so many of them that a different one keeps adding to my list.”

Kevin: “Get to a doctor, and don't accept an in and out diagnoses. My first cardiologist told me that I was in such bad shape when he met me, that he honestly didn't know what side of the sod I'd end up on. If I had been properly diagnosed earlier, I may not have had four months of disability, I may not have had four terrible months of not being able to sleep or to lay down. I may not have had to rely on absolutely everyone else to help me get basic things done. And something I've only recently come to admit, I may not have had that one night where I was so low, where I was ready to give up, that I thought about ending my own life. So, long story short, if you think you have anything wrong with your heart, please get it checked out.”

Jackie: “See your family doctor to discuss your symptoms as signs of general heart failure are also symptoms for other conditions. I would also suggest beginning to record your symptoms in a health diary, include your morning weight, and if you have a BP (blood pressure) machine, record your BP and HR (heart rate) in the morning, too.”


If you're living with heart failure, or care for someone who is, visit our Facebook support group and join the conversation.




Why we’re stepping out for heart failure patients in Canada


It’s 2018 and we’re stepping out for heart failure patients in Canada because the need for advocacy is greater than ever. 

One million Canadians are living with heart failure and 50,000 are diagnosed with the illness each year, according to the Ted Rogers Centre for Heart Research. Meanwhile, heart failure is costing the Canadian healthcare system up to $2.3 billion annually, with the majority being spent on acute care. 

However, there is a strong desire within the healthcare community to improve the overall quality of the patient experience. In fact, physicians who effectively communicate can make a profound difference in their patients’ quality of life, even in chronic care.  

This is conveyed in the 2017 feature titled ‘How the Patient’s Voice Advances Safe Care’ which was published by the Risk Management Magazine of the Canadian Medical Protective Association (CMPA). It indicates how powerful patient voices can be in leading to better healthcare outcomes. 

As Canada’s first and only national patient-led heart failure charitable organization, we’re working to engage patients, families, and caregivers, to provide education and support. We’re facilitating access to the latest research, innovations, and treatments, with one common goal – to advocate better care for all. 


HeartLife Foundation beginnings

Our founder and president, Dr. Jillianne Code first met our co-founder and vice president, Marc Bains, at the Heart and Stroke Roundtable in 2016. They were both invited to provide their perspective on heart failure care in Canada, and they were the only two patients at the table. 

“We got to chatting and determined that there needed to be a dedicated advocacy group for those effected by heart failure. There was no other advocacy organization focused on heart failure that was run by patients for patients,” says Marc. 

In their discussions with healthcare leaders in Canada, the lack of organized patient advocacy efforts, led by patients, was identified as a gap. They were challenged by Dr. Sean Virani to do something about that and the concept of the HeartLife Foundation was born.



Progress and results

Now, two years later, the HeartLife Foundation is working to raise awareness of heart failure and taking action for patient care while building a local, regional, and national, network of heart failure advocates. 

As a member of the Better PharmacCare Coalition, we’re collaborating with stakeholders to ensure patient access to the latest innovative therapies; we sit on panels, committees, and boards to provide patient perspective and contribute from a foundational level. At present, we’re participating in research being undertaken at UofA, UHN, UNBC, UBC, UofT, and UOIT. 

The HeartLife Foundation mentors, supports, and guides, patients, families and caregivers, in times of need and operates a closed Facebook support group. Additionally, we educate and empower patients online to effectively self-manage their illness and share information detailing the latest research, trends, and tips on our social media channels. 

Marc has been instrumental in obtaining grants to support opportunities to expand our reach, bring patients in to national conferences, and get plans in motion for a nationwide patient registry. Meanwhile, Jillianne has been a strong driver building relationships and in roads in the scientific community.  


Advocating for access to medications

A 2016 report on ‘The Price of Public Health Care Insurance’ by the Fraser Institute noted how the average payment for public health care insurance ranged from $3,620 to $11,795 for six common Canadian family types. 

Between 2006 and 2016, the cost of public health care insurance for the average Canadian family “increased 1.4 times faster than the average income, 1.3 times as fast at the cost of food, and at about the same pace as the cost of shelter,” according to the report. And this is before the cost of what could be life-saving prescription medications. 

To help heart failure patients get access to the medications they need, The HeartLife Foundation advocates at government level, in meetings with MLAs, as well as writing letters to the Canadian Agency for Drugs and Technologies in Health (CADTH) and PDCI Market Access to support specific medications. 


Representing at the Heart Failure Update

The Heart Failure Update is Canada’s largest meeting devoted to heart failure which features both clinical and scientific segments. This year, the HeartLife Foundation will once again be attending the meeting as faculty. 

Including patients in major cardiology conferences in Canada is relatively new, but Jillianne and Marc were the first two patients to break through this barrier in 2016. Since then, they have participated as faculty at both the 2017 Heart Failure Update as well as the 2017 Canadian Cardiovascular Congress. 

“In 2017, we had our largest presence at the Heart Failure Update with 26 patients and caregivers in attendance. It [the meeting] gives us the opportunity to interact with healthcare professionals and patients/caregivers from across the country,” says Marc. 

HeartLife’s Jillianne, Marc, and Dr. Virani, wrote an article in collaboration with Canadian doctors and scientists which was published in the Canadian Journal of Cardiology in November, 2017. Titled ‘The Need for Heart Failure Advocacy in Canada’, the article delves into the key challenges facing the advancement of patient-centred heart failure care in Canada. 

It provides a detailed look at targets for health care system redesign and policy initiatives that need to be addressed in order to bring about meaningful change for the state of heart failure. You can read the article here.

How Jamie Barber got a second chance at life with a heart transplant



Jamie Barber experienced a childhood that most children don’t. He was diagnosed with
lymphoma at two years old and received chemotherapy until he was six. Doctors knew
that the amount of chemo he had would damage his heart, and it did. It left him with
dilated cardiomyopathy, a disease of the heart muscle that affects the chambers by
weakening their walls.

During a vacation in Florida, Jamie remembers feeling pain in his liver, being tired, and
sleeping all day. He didn’t know what was wrong and dismissed it as fatigue. However,
when he returned home to Calgary and visited the hospital, he was told that he had
heart failure and that he would be going on a heart transplant wait list.

“I was 14 when they told me I needed a transplant. That was the first time I had heart
failure,” Jamie told HeartLife. He spent over six years on the list at 0-1 urgency. Then at
age 20, he had heart failure again during a holiday in Mexico. After this he was moved
to number 2 on the urgency scale. He laughed as he remarked: “I don’t know why it
always happened to me on vacation.”


A life-changing moment

After six months on the organ donor wait list at a new level of urgency, 21-year- old
Jamie received the answer to his prayers with a heart transplant donor. It was 2004, he
was living in Calgary at the time and travelled to Edmonton for his transplant operation.
One of the most remarkable feelings he remembers during his recovery was the pulse
sensation in his fingertips.

“The pulse in the fingertips, that was something really cool. I never realized how sick I
actually was. When I was sick with heart failure I always thought ‘oh you’re lazy’. I never
totally put it together until after the transplant when I had the energy of a normal person.
I thought ‘this is incredible, normal people have this energy all the time’.”

Within six months, Jamie was playing hockey, something he was told he couldn’t do at
14. He notes that he has to be careful and spend longer warming up because he has no
nerves going to his heart now, but he feels that it’s getting better as time goes on.
Now, 14 years after his transplant Jamie is looking forward to the future and enjoying
things in life that he never dreamt were possible, including becoming a father for the first

“It’s unbelievable, I was sick my whole life and now I’m a new person. The recovery was
probably the most incredible thing I’ve ever experienced, that and the birth of my child.
On February 26 my wife and I had our first kid.”



The importance of organ donation

As Jamie celebrates life following his heart transplant, he encourages Canadians to
register to become organ donors. He feels that the current shortage of registered
donors nationwide could be due to the fact that many people haven’t had the
opportunity to do so.

“Register to become an organ donor. I wouldn’t be alive today without mine, I wouldn’t
have a son, I wouldn’t have a wife, I wouldn’t be playing hockey. It was a whole process
that saved me; my community, friends, family, and the village It’s about helping each
other out, and that’s really what being an organ donor is. A donor’s good deed goes on
forever as they live on through someone else,” Jamie told HeartLife.

More than 1,600 Canadians are added to organ wait lists every year, according to the
Canadian Transplant Society. BC Transplant reports that there are currently over 600
patients waiting for a transplant in this region alone.

The Canadian Transplant Society states how one donor can benefit more than 75
people and save up to eight lives. “The following organs can be donated from one
individual; heart, lungs, kidneys, liver, pancreas, eyes, and skin/tissue. Kidneys are one
of the highest of all organs in demand,” said transplant recipient, Sunny Tutt, and
caregiver, Manpreet Johal, co-founders of Jivana Organ Donation Society.

National shortage of registered donors

According to Health Canada, the rates of organ donation in Canada are much lower
than other countries, including the United States. More than 4,500 people were waiting
for organ transplants in 2014 and 2,356 organs were transplanted that year. But due to
a shortage of registered donors, 278 people died while waiting for a transplant in 2014.

Although 90% of Canadians support organ and tissue donation, less than 20% have
made plans to donate, as reported by the Canadian Transplant Society.

Sunny and Manpreet of Jivana Organ Donation Society believe that there are a number
of factors which cause Canadians to refrain from registering to become organ donors.
Common issues that they see at Jivana are associated with accessibility, and that most
people are unaware of the methods used to register. When individuals see their
information booths, they rush over to explain that they intended on registering for a long
time but didn't know how. “Some refrain from registering due to personal, religious or
cultural beliefs and/or misconceptions with Organ Donation.”

Jivana is a society made up of organ transplant recipients and care takers who share
their personal experiences with organ failure, donation, and transplant, to further
educate the community. The society spreads awareness in the South Asian community
where they see very low donor registrations.

“There are many countries that require individuals to opt-out from being organ donors.
As you know, in Canada we are required to register our decisions through BC
Transplant. Organ donation and the registration process is rarely discussed in today's
society, especially in diverse communities. This can often lead to misunderstanding the
process as a whole,” Sunny and Manpreet told HeartLife.

How to register

Jivana has found that people are “amazed that it only takes seconds to register their
decision” as many are “under the impression that they have to submit their medical
history.” Jivana Organ Donation Society often has information booths set up at events in
the Vancouver area where BC residents can learn more about organ donation.
At HeartLife, we’re advocating for greater access to patient care. We support patients
and their families in times of need, many of these patients are currently on heart
transplant wait lists.

Click here to register and become an organ donor via the Canadian Transplant Society.
You have the power to help save lives by making a choice today.


This is why one million Canadians are sacrificing their basic needs to afford drug costs


What you’ve heard is true: Canada does in fact take longer than the U.S and the European Union to approve new drugs. According to a study published by the Canadian Medical Association Journal (CMAJ), delays in submitting new drugs to Health Canada for review have had a huge impact on this, with certain products being delayed for up to two years. 

Of course, proceeding with caution is paramount when the side effects of new drugs are unknown. However, for those living with chronic disease, this means an extended delay in access to what could be life-saving medication. 


Where it begins

Before prescription drug products are authorized for sale in Canada, scientists at Health Canada assess them for safety, efficacy, and quality. Firstly, new drugs must undergo a series of preclinical tests, if the results of which prove desirable and non-toxic, the sponsor (individual or company taking responsibility for the application) can apply to the Health Products and Food Branch (HPFB) of Health Canada for a clinical trial. 

If the trial results show greater potential therapeutic value than the risks associated with drug use, the sponsor (typically a pharmaceutical company), can then apply for a ‘New Drug Submission’ with HPFB where another round of tests take place. Although the HPFB does have a priority review process in place for drug products used for “life-threatening” or “severely debilitating conditions”, access can be further delayed at a provincial level.

Chronic heart failure patients in Canada now have access to the prescription drug Entresto, yet there are still limitations on Indigenous populations. Meanwhile, the drug Ivabradine which can be used for the treatment of stable heart failure, was only approved by Health Canada in 2017. Here’s the reality: It had been authorized by the European Medicines Agency five years prior to this, in 2012. 


Out-of-pocket costs

Canadians with public health insurance have access to medical and hospital care, but not full prescription coverage. This is, according to the Canadian Alliance for Sustainable Health Care, because access is a mix between public prescription drug plans and private insurance plans. 

The tragic result is that one in ten Canadians cannot afford out-of-pocket costs for the prescription drugs they need. At least one million go without food or heat and forego other household spending in order to purchase the drugs.

Survey findings on the consequences of patient charges for prescription drugs in Canada published by CMAJ Open revealed that additional charges for prescription drugs cause individuals to use more health care services than they would have otherwise, “to skip doses or reduce dosages, delay refilling prescriptions, or refrain to fill prescriptions at all.” This is known as “cost-related nonadherence.” 

Furthermore, the results found this to be more common among younger Canadian adults (notably females), lower income groups, Indigenous peoples, and those with poorer health status. It stated that the higher rate of “cost-related nonadherence among Indigenous peoples likely results from structural barriers in the health care system.”

Yes, the First Nations and Inuit Health Branch of Health Canada does provide “universal prescription drug coverage to eligible patients through the Non-Insured Health Benefits Program.” The problem? More than half of all Indigenous people in Canada don’t qualify for this coverage. 



Public spending on medications

The Government announced an “Advisory Council on the Implementation of National Pharmcare” in the 2018 Federal Budget. The Council will be studying and analyzing domestic and international programs for full prescription drug coverage before recommending options for implementation in Canada. But how long will those suffering from chronic illness have to wait? 

According to a report on provincial public expenditures on medications by the Canadian Institute for Health Information (CIHI), in the time between December 2014 and November 2016, BC only launched 31 (15%) of a possible 209 single source products. Over the same period, Alberta launched 55 products, Ontario 52, Manitoba 64, Quebec 40, Nova Scotia 63, and New Brunswick launched 80. 

Overall, medication spending represents only 7.4% of the total provincial/territorial government spending nationally, as stated in a pharmaceutical payer analysis by CIHI.

Provincial spending ranges from a high of 9.1% in Ontario to a low of just 4.9% in British Columbia. The BC government spent $942.6 million on medication in 2010-11, but since then strict budgeting has reduced the sum - it was $927.4 million in 2015-16. A news release issued by the Better Pharmacare Coalition in February 2018, noted that BC’s expenditure on prescription medications is the lowest in Canada on a per capita basis (34% below the national average).

This translates to approximately 40 drugs not being listed for coverage on the BC public formulary that are covered in at least one other Canadian province.


Greater need for patient advocacy

It’s estimated that $14.5 billion (42.7%) of prescribed drug spending was financed by the public sector in 2017. By comparison, $12.1 billion (35.5%) was financed by private insurers, and the remaining $7.4 billion (21.8%) was funded by Canadian households, according to CIHI’s 2017 report on prescribed drug spending

In January 2018, Ontario became the first province to cover the cost of prescription medications for youth under the age of 25. While this is a great start, it may not benefit many heart failure patients. Health Canada have confirmed that approximately 2.4 million individuals living with heart disease in the country are 20 years of age or older. 

The disparity between provincial public expenditure on medications and the high cost of prescription drugs once they are approved for distribution in the market mean that the need for patient advocacy is greater than ever before. 

At HeartLife, we’re advocating for better care and working with organizations to help give patients access to the latest therapies and often life-saving medications. The road ahead is long, and we’re committed to supporting heart failure patients nationwide, every step of the way.