When Kathy Howes experienced fainting, dizziness and racing heartbeats, she faced a frustrating search for answers. Nobody connected those symptoms to her heart valve condition, mitral valve prolapse — until it was almost too late. Now, after valve replacement surgery, Kathy is sharing what she learned along the way, and what she wants people to know about valve disease.

Question: I have recently been diagnosed with heart valve disease. Do I need to restrict my physical activity?

This global roadmap, to which Heart Valve Voice Canada is a contributor, is designed to support patient organizations and advocates who wish to implement shared decision-making for people facing heart valve disease treatment options.

Question: Following surgery to replace my aortic valve, I often experienced what I can best describe as brain fog and reduced mental sharpness during my recovery. Is this common?

Len Crispino never gave up hope. Cancer treatment had left his faulty aortic valve with further damage, and surgery to replace the valve was considered too risky. Learn how Len and his wife, Marisa, overcame this challenge and more. As a board member of Heart Valve Voice Canada, he’s sharing his story to help others learn from his experience.

We are pleased to announce Hugh MacPhie as the new Heart Valve Voice Canada Chair. Having joined the board in 2022 Hugh will build on the board’s mission to grow it's reach and impact.

In an exciting new partnership, the Canadian Cardiovascular Society, Heart Valve Voice Canada, and MediSystem Pharmacy are teaming up to put a spotlight on heart valve disease and improve early detection for those most at risk.

As we work towards our mission to improve the health and quality of life for people living with heart disease, a key part of our action plan involves finding the right partners to drive our patient advocacy forward. Our Heart Valve Voice Canada Board of Directors is the heartbeat of our organization and we are continually looking for advocates who will help us empower people and save lives. We are honoured whenever someone volunteers their skillset and time to our mission, and we are happy to announce a few new additions to our team.

Packing the right items and being prepared for your hospital stay can remove some of the stress of your upcoming treatment. Anticipating what you will need when you come home can also help you focus on your recovery and support your journey back to an active life.

When Virginia got the call telling her she didn’t have to travel to Toronto for her valve procedure, she couldn’t believe it. Until that moment, Virginia and her daughter were contemplating the worry of a long flight from Saskatchewan, finding a place to stay, and the stress of undergoing a heart-related procedure. But that call changed everything, for the better.

Heart valve disease patients who live in Saskatchewan and are candidates for a transcatheter mitral valve repair procedure, can now get the procedure done in their home province, avoiding personal out-of-province travel costs, health risks, and accompanying stress.

Early screening of heart valve disease saves public health care systems resources, but prevalent ageism delays diagnosis, limits care, and leads to avoidable costs and impacts on people’s lives.

All MPPs and staff at Queen’s Park in Toronto were invited to participate in the #ListenToYourHeart Challenge reception. MPP Rudy Cuzzetto introduced Bill 66, The Heart Valve Disease Awareness Act, proclaiming February 22nd as Heart Valve Disease Awareness Day in Ontario. During the reception, the landmark report, Heart Valve Disease: Working together to improve the patient journey was shared with key decision makers. More than 90 policy makers and staff participated and showed their support.

In 2019, Oakville resident Karen Timmerman thought she had the flu. Her persistent symptoms resulted in a trip to her local hospital. While trying to find the source of her illness, doctors discovered a heart murmur which turned out to be caused by a defective heart valve. “This story is shared with permission from Hamilton Health Sciences and author Ellie Stutsman. The original article was published Sept. 16, 2022.”

Focusing on healthy living is important for everyone, but it’s particularly important for someone who has been diagnosed with heart valve disease. Healthy living includes managing key risk factors for your heart health like not smoking, maintaining a healthy blood pressure measurement, exercising, keeping a healthy weight, and managing your blood cholesterol. There is a lot you can do to control these risk factors for your heart health.

February 22nd is Heart Valve Disease Awareness Day and we are joining forces with the Canadian Cardiovascular Society to improve early detection of heart valve disease by educating Canadians on the importance of stethoscope checks, especially for those ages 60-plus. Join us at one of the stethoscope events we are hosting across the country. Read more to see the list of locations.

Lise’s heart murmur was detected as part of a routine physical examination, which included a stethoscope check. Her journey eventually led to a heart valve replacement, which occurred the same day as her sister’s heart surgery. In a ‘twist of fate,’ the surgeon who performed Lise’s procedure, also operated on her sister, on the same day! “We call ourselves the heart twins now,” says Lise’s sister Eveline.

Are you interested in sharing your expertise and experience to help advance Heart Valve Voice Canada’s strategic priorities? HVVC is currently seeking individuals to serve on our Board of Directors. We are looking for skilled individuals to support the governance mandate and guide HVVC. Experience and knowledge in finance or law are of specific interest.

As we approach the end of the year, we want to thank all our readers who have supported and engaged with Heart Valve Voice Canada. You have helped us improve awareness of heart valve disease and how we can do better in diagnosing and treating it. Looking ahead we are excited about the new ways that we can serve and advocate for those with heart valve disease. We also want to encourage you to prioritize your health this holiday season. To help you in doing so, we are sharing a few tips for having a happy and healthy holiday season

From a young age, Shirley enjoyed being active. She square danced, played baseball, volleyball and participated in track and field. While family and work kept her very busy, Shirley lived most of her life with a bicuspid aortic valve. Twice when her failing valve was slowing her down, she was faced with major decisions including navigating different treatment options.

Read this National Post story to find out why Dave, a heart valve disease patient, says you shouldn’t dismiss symptoms like feeling, breathlessness, dizziness or fatigue as regular signs of aging.

When Rudy Cuzzetto came out of open-heart surgery, he could hear the click of his new mechanical heart valve. Today, he doesn’t hear it, but has other reminders of how lucky he is for that day more than 13 years ago when his family doctor did a simple stethoscope check.

Mandy didn’t notice a change in her symptoms, however once recovered from her surgery she realized how badly affected she was by heart valve disease. In her words, “It’s as though I’ve discovered new gears on my bike!”

As a person with lived experience with mitral valve disease Hugh brings the important patient perspective to the Board of Directors. Hugh is a business strategist, public speaker and author who has advised some of Canada’s most successful leaders and organizations from some of Canada’s largest companies to high-tech start-ups. His expertise in strategic leadership and facilitation will be an asset as we grow and work to improve the health and quality of life of people living with heart valve disease.

Christian's murmur was detected at a routine medical checkup for an immigration visa application to support his imminent move to Canada. This occurred weeks after welcoming their second child into the world, so Christian's life was turned on its head. Further tests indicated that he required urgent surgical intervention. Now in Canada, he is not wasting his second chance!

The report Heart Valve Disease: Working together to create a better patient journey commissioned by Heart Valve Voice Canada and written by The Health Policy Partnership provides a comprehensive view of the entire heart valve disease patient journey from first detection to diagnosis, follow-up, and treatment, identifying gaps and their impacts. This report was developed under the guidance of a multidisciplinary advisory council, whose members included people with lived experience and healthcare professionals engaged in heart valve disease in Canada. The patient perspective was the common thread throughout this report.

The Institute for Health Economics (IHE) has published a report which provides the results of a national roundtable convened in November 2021 to identify the necessary components for a national strategy to address heart valve disease. Heart Valve Disease is on the rise, affecting millions of people worldwide. It can be fatal if untreated but is increasingly treatable with early detection.

Ruth was born with a congenital heart defect and at age nine she had open-heart surgery to repair a faulty valve. It was a success, and her prognosis was good, such that she did not experience significant limitations in participating in life. Unfortunately, this changed in 2020, which brought significant challenges to Ruth as her heart valve was failing again. Luckily that year is now behind Ruth and there are great lessons from her well documented long and challenging journey. ‍

When Joylyn Bogle was 59, she was admitted to the hospital with congestive heart failure. Her heart was so weak that operating on her would have been potentially fatal, but without intervention, she was going to die. It was then decided that Joylyn would be treated for her mitral valve regurgitation with a less invasive approach using catheters: Transcatheter Edge to Edge Repair (TEER). She is now enjoying being more active again.

The mitral valve is a valve on the left side of the heart. This is one of the heart’s four valves that help prevent blood from flowing backward as it moves through the heart. When the valve is not functioning optimally blood can leak backwards requiring the heart to work harder or have reduced blood flow and increased pressure in the lungs that lead to heart failure and other conditions. Mitral valve disease can be acquired later in life through several conditions or congenital (present at birth).

With the end of the year in sight, we want to thank all of the visitors and followers who have supported and engaged with Heart Valve Voice Canada over this past year. From sharing our social media campaigns and news articles to sharing our message with your friends, family and elected leaders, you have helped us improve awareness of heart valve disease and how we can do better in diagnosing and treating it. We are now looking ahead to 2022 and excited about the new ways that we can serve and advocate for those with heart valve disease.

Not Another Minute should go by with Canadians not being aware of the risk factors of heart disease, especially considering nine in ten Canadians have at least one risk factor for heart disease and stroke. The stats are sobering, but in this age of information we have opportunities to increase awareness of the risk factors and steps one can take to prevent it.

Heart valve disease results from damage to the valves of the heart. Heart valves have tissue leaflets which open and close with each heartbeat to control the direction and flow of blood through the heart. When the leaflets or associated structures become damaged, or the valve opening becomes compromised, blood flow is restricted, or the valve becomes leaky. This causes strain on the heart as it attempts to compensate.

More than a year after my valve replacements, I can look back and see how badly affected I was by the heart valve disease without being aware of it. It’s as though I’ve discovered new gears on my bike! I can do so much more exercise now and it no longer wears me out to run errands. I will always be managing a chronic condition alongside the long-term monitoring of my heart valves, but I am excited to see my stamina continuing to improve and feel hopeful about what I will be able to achieve in years to come.

This week is Heart Valve Disease Week, here in Canada and around the globe. It’s a time when we pay particular attention to helping people understand the symptoms and signs of heart valve disease. It’s also an opportunity to share stories of members of this community who have received care and who have become passionate about helping other Canadians realize what to watch for and when to seek care.

Although many Canadians have been seeing their GPs virtually since March 2020 and intend to continue with virtual care for non-emergency appointments, three-quarters of respondents aged 25 and older to a national survey released today, believe the virtual visit is not as effective as in-person appointments in discovering new or worsening symptoms.

As a recently retired 62-year-old, Dave was fully engaged in his life but began to notice that he couldn’t “go” like he used to. After mentioning how he was feeling to his doctor, Dave was diagnosed with severe Aortic Stenosis and underwent heart valve replacement at the height of COVID-19. Today, Dave is increasingly 'back to normal' and living a full life!

Knowing the symptoms of heart valve disease and seeking care when needed is one of the best ways to #StepUp and protect your heart health during the pandemic.

It is important for heart valve disease patients to prioritize their heart health during the pandemic. If you, or your loved one, are experiencing new or worsening symptoms of heart valve disease, don’t delay seeking care - #JustGo to the hospital or emergency department.

Bryan was born with Mitral Valve Prolapse and lived with the condition for many years. Later in life, after four misdiagnoses, he was identified as having infective endocarditis. After having to go on life support, Bryan encourages other patients to never underestimate the importance of early detection.

Health Canada has recently expanded indication and approval for two transcatheter heart valves for use in a TAVI procedure.

During Heart Month and on Valve Disease Day, Heart Valve Voice Canada is pleased to recognize recent advancements in treatment options for Canadian cardiac patients, but remains concerned about the continued delays and difficulties in accessing treatments as a result of the pandemic.

One of the last procedures completed before COVID-19 prevented them from being performed for period of time, this patient received TAVI and was discharged and home a total of 22 hours after the procedure was completed.

Heart Valve Voice Canada is excited to welcome Ellen Ross as Managing Director! This is a new role for HVV Canada that will be the next step in the growth and development of our organization.

Over the past year, the COVID-19 pandemic highlighted an interesting shift in the delivery of patient care: digital health. The significant increase in demand for virtual and/or remote options to receive care and medical support due to limited in-person interactions has shone the spotlight on the need to explore how to properly and most effectively implement this new option.

At Heart Valve Voice Canada, we’re excited to share with you that the Global Heart Hub and The Health Policy Partnership have launched a report, Heart valve disease: working together to create a better patient journey.

With the end of the year in sight, we want to thank all of the visitors and followers who have supported and engaged with Heart Valve Voice Canada over this past year. We also want to encourage those of you with heart valve disease to take the time to rest and prioritize your health this holiday season.

HVV Canada is encouraged by the Government of Ontario’s continued investment in cardiac disease treatments and is now calling on the Province to further its commitment by accepting Ontario Health’s recommendation to publicly fund TAVI in adults with severe Aortic Stenosis who are at low surgical risk.

HVV participated in the Family Medicine Forum (FMF) conference hosted by The College of Family Physicians of Canada from November 4-7, 2020. The Conference saw 3000+ clinicians and other healthcare professionals attend virtual sessions and exhibitor booths for information sharing, education, and networking purposes.

At age 25, Nancy discovered that she was born with a biscuspid aortic valve. After two decades without incident, sharp chest pain resulted in a trip to the emergency department. After two open heart surgeries, Nancy says that she will never minimize how she's feeling or put off seeking care ever again.

As COVID-19 case numbers continue to cause uncertainty and changes in Canada, it is important that we apply our learned lessons from the country’s initial response to the pandemic.

Avid cyclist and Ironman participant, Fabio had to take a break from sport because he needed heart surgery due to bicuspid aortic valve stenosis. However, it didn't take him long to get back on the bicycle and back in the race.

On World Heart Day, Heart Valve Voice (HVV) Canada is shining a light on the over 148,000 procedures that have been postponed during the pandemic in Ontario alone, and the importance of advocating for your health if you’re experiencing new or worsened symptoms associated with cardiac conditions.

World Heart Day was created by the World Heart Federation and aims to inform people around the globe about cardiovascular disease, including heart disease and stroke.

HVV Canada is proudly supporting our global colleagues as Heart Valve Disease Awareness Week takes place in various jurisdictions from September 14-20, 2020.

Survey results published by Global Heart Hub show that older Canadians are as unaware as ever of aortic stenosis, the most common form of heart valve disease. In its most serious form, more than half of patients with severe heart valve disease die within two years of developing symptoms.

Read our guest Post from Wil Woan, Chair of the Heart Valve Disease Patient Council with Global Heart Hub, as he discusses the realities of heart valve disease and the importance of Heart Valve Disease Awareness Week.

Questions answered by Dr. Charles Peniston, Cardiovascular Surgery Specialist, Chair of HVV’s Board of Directors.

Bryan was born with Mitral Valve Prolapse. He didn't experience symptoms until 2014, when an infection of one of his heart valves had serious implications on his health. A year later, Bryan received highly successful heart valve repair surgery. His message to other patients: advocate for your health, take it seriously, and don't wait until it's too late.

We have joined with our global partners for the #JustGo Campaign, reminding heart patients that if your heart says so, #JustGo to the hospital or your doctor.

Heart Valve Voice (HVV) Canada, a non-profit patient advocacy organization for those with heart valve disease, urges provincial governments and health care institutions to prioritize the treatment of heart valve disease patients as elective surgeries are reassessed and begin to resume during COVID-19.

Heart Valve Voice (HVV) Canada, along with its Board of Directors, is pleased to announce that it has joined Global Heart Hub (GHH).

We have updated our website with answers to frequently asked questions, additional links and resources to help you stay informed, and access to a symptom tracker if you are awaiting or have recently received heart valve treatment or surgery.

With the recent developments of COVID-19, Heart Valve Voice Canada and its Board of Directors believe it is important to share information regarding what heart valve disease patients should be aware of during this time.

Heart Valve Voice Canada is proud to be participating in Heart Valve Disease Awareness Day on February 22, 2020. After an eventful 2019 for our organization, we’re excited to continue to the momentum as we join with others in the movement to raise awareness of heart valve disease in Canada and across the world.

HVV Canada hosted a luncheon at the Ontario Legislative Assembly in Toronto on December 2, 2019.

On December 9, 2019, HVV Canada offered complimentary stethoscope checks at the Newmarket Seniors’ Meeting Place in Newmarket, Ontario.

On December 9, 2019 from 10:00am – 3:30pm, Heart Valve Voice (HVV) Canada will conduct complimentary stethoscope checks at the Newmarket Seniors’ Meeting Place.

At 54, John found out that he had a severe aortic stenosis and an AAA aneurysm. He decided on a bio-tissue SAVI (Surgical Aortic Valve Implant), and ten weeks post-surgery found himself back at work with a new perspective on life and a new appreciation for what's important in it.

We offer a huge shout out to the thousands of Ontarians who added their voice this past Spring to our first digital advocacy campaign focused on improving access to the Transcather Aortic Stenosis Implantation (TAVI) procedure!

Peter has been an avid golfer in his retirement years, but after he was diagnosed with aortic stenosis at 74 years old, the symptoms prevented him from playing his beloved sport. You might think heart surgery would have forced Peter to put his clubs away for good, but not for Peter.

Health Quality Ontario, the provincial advisor on the quality of health care in Ontario, is looking to speak with patients and caregivers who’ve had experience with narrowing of the aortic heart valve, or aortic stenosis.

Heart Valve Voice Canada is proud to officially join its Heart Valve Voice counterparts around the world to provide a voice to Canadians affected by heart valve disease - and what better day to do so than today, Heart Valve Disease Awareness Day!