My Journey with Heart Failure

Being that it’s Canada’s 7th Annual National Heart Failure Awareness Week (May 4-10, 2025); I thought I’d share my story…

“Your lungs are filled with water. This is a sign of Congested Heart Failure. You need to go to emergency.” These are the words my GP said to me on the phone the day after a lung x-ray on March 29th 2024. I was admitted to the Mississauga Hospital that same night and subsequently spent more than a week as a patient in their cardiac ward, followed by what was a year full of every heart test imaginable, countless check-ups and a delicate balance of a variety of medications.

The precursor to all of this, was a few weeks of what I thought was just a viral infection; coughing, lethargy, breath loss & sleep disturbances. Gradually however my symptoms worsened to the point where I found myself sleeping in a chair as I just couldn’t breathe fully lying down anymore. I called my GP to let her know that things had taken a serious turn for the worse and so a x-ray requisition was made and I was advised to go to emergency the next day. Once in the hospital, I was diagnosed with HFrEF (Heart Failure with Reduced Ejection Fraction) with no known cause. HFrEF is a long-term condition that affects the heart's left ventricle, leaving it unable to pump blood well enough to give my body the supply it needs. What I thought was a simple winter cold wasn’t the case at all.

I always prided myself in living a healthy balanced lifestyle so getting to the bottom of why I was suddenly hit with heart failure was important to me. I knew there was a family history of HF on my dad’s side so I pushed for genetic analysis, and nine months later I met my geneticist. In the end, I did indeed test positive for a gene variation associated with a hereditary cardiomyopathy known as BAG3, confirming a genetic cause to all of this. We were told the markers for my gene mutation were only identified within the last decade. I was amazed and relieved that they found something. I had my answer.

Where I’m at now?

Being a Registered Massage Therapist (RMT) is an incredibly rewarding job and one that allows me to stay physical and also connected to my community; both important aspects of my life. After some time off, I returned to work but in a reduced capacity. I am slowly increasing my hours as the months pass, all the while keeping a steady focus on my new health regime. My ever changing medications certainly have some side effects that I need to work around but I am thankful because they are essentially keeping me alive. I’ve adjusted a few dietary concerns related to this condition, such as monitoring my daily intake of sodium, potassium and liquid amounts. I have all but completely removed caffeine and alcohol from my diet. I do my best to get into a brisk walk everyday and hope to continue to schedule in more cardio-strength training. So although I have practiced healthy living for prevention, I’m now reminded that it is also a huge benefit to recovering from, and living with an illness. I’m currently enrolled in a 16 week cardiac rehab program and I will most likely get an ICD (implantable cardioverter-defibrillator) in the near future.

My husband and I both greatly enjoy backcountry tripping and while we had to cancel our trips last year, we're already making new plans to take exciting trips to Temagami and Killarney this summer. The cardiac rehab program has helped me to feel more confident in cardio-styled physical activities and my cardiologist has given me the go ahead.

I’m now a patient at the Peter Munk Cardiac Centre (PMCC) and have learned lots about my health and have accepted my condition. From time to time, I may feel a bit down but overall I feel lucky to have pulled through. My heart is still pumping, it just needs a little extra support. And, to everyone who has helped me through this I am very grateful.

Some interesting facts

“Heart failure (HF) is now one of the fastest growing cardiovascular conditions in the world. In Canada, it’s estimated that more than 100,000 Canadians will be diagnosed this year alone, adding to the 800,000 people already living with HF.” - Canadian HF Society.

“More than half a million Canadians are living with heart failure and there’s currently no cure for this chronic illness. While the illness typically affects people later in life, it can affect all ages, and each patient case is unique. It’s important to raise awareness of the signs and symptoms of heart failure, and this is especially important as early diagnosis of heart failure ensures optimal treatment.” HeartLife Canada

So what are signs and symptoms of heart failure? They vary from person to person but symptoms range from chronic fatigue, shortness of breath, rapid weight gain and/or signs of swelling, heart palpitations, dizziness, lightheadedness, fainting spells…. If you have any of these symptom’s or if you are aware or notice a pattern in your family’s health history in heart disease or any other condition, don’t ignore them. You can always bring it up to your GP and ask for tests. It may take some time but the resources are out there. Knowledge is power.

If you are interested in reading other Heart Failure (HF) stories, you can find them on the HeartLife Canada link below. Donations are also always needed and used efficiently so I’ve added links to two other leading Canadian HF organizations.

HeartLife Canada - https://heartlife.ca/

Canadian Heart Failure Society - https://heartfailure.ca/

UHN (United Health Network) Foundation - https://uhnfoundation.ca/programs/heart/