The post Jenny’s Story: Reflecting on Five Years Since Heart Failure first appeared on HeartLife Foundation.

Throughout her career, one lesson has stayed with her above all: respect the lived experience and knowledge that patients bring to the table. “Listen to them,” she reminds us. “It’s about the whole person, not just the physical aspect.”

Bonnie is not only HeartLife Foundation’s Nursing Champion she is also a fierce advocate for patients and caregivers. As a caregiver herself to her father, who lived with heart failure, Bonnie has experienced both sides of the healthcare system. She brings that perspective to her work, blending professional expertise with compassion and lived experience.

You can often find Bonnie joining HeartLife’s weekly Zoom hangouts, where she happily answers questions from members. And while she generously shares her knowledge, she always makes sure to remind everyone to check in with their doctors for medical guidance.

The post Meet Bonnie: HeartLife’s Nursing Champion, caregiver, and passionate advocate for patients and families. first appeared on HeartLife Foundation.

Hello, I’m Paula Henderson, a grateful member of HeartLife — Community Support for Heart Patients and Caregivers.

Lived Experience With Heart Failure

I was born with a congenital heart disease called Hypertrophic Obstructive Cardiomyopathy (HOCM). My mother had it, and so did her mother — my grandma passed away suddenly at age 56 from cardiac arrest. HOCM means my heart muscle is too thick, making it difficult for my heart to pump.

As a child, I ran on school teams and often felt short of breath, but I assumed I was just out of shape. Although doctors occasionally mentioned hearing a murmur, I never received follow-up testing, so I believed there was nothing to worry about.

That changed in 2008, when my family doctor noticed the murmur had grown louder and referred me to a cardiologist. By 2010, at age 55, I was experiencing daily symptoms — shortness of breath and fluid overload. Medications weren’t working, so I underwent my first open-heart surgery, a septal myectomy to relieve the obstruction.

Unfortunately, my symptoms didn’t improve, and an MRI later revealed the surgery had been unsuccessful. In 2012, I underwent a second open-heart surgery at the Peter Munk Cardiac Centre in Toronto. After surgery, I went into cardiac arrest and was thankfully revived. The next eight years were managed with medication and many hospital visits. It was a tough road.

The Road to Surgery and Recovery

In 2020, my health worsened again. Both my aortic and mitral valves were severely leaking. Doctors assessed me for a heart transplant, but because of my blood type and antibodies, the wait would have been close to a year — and my heart couldn’t wait that long.

Instead, I had a third open-heart surgery to replace both valves with mechanical ones. This was during the height of COVID-19, before vaccines were available. While recovering, I contracted COVID in the hospital and suffered a collapsed lung. I needed puffers to help me breathe, and I still use them daily due to long-COVID.

Today, I continue to be closely monitored at the Peter Munk Cardiac Centre. Every morning I use an app called Medly to log my blood pressure, heart rate, weight, and symptoms. My heart failure team sees the data in real time and calls me if anything looks concerning. As someone who lives alone, this technology feels like an extra set of eyes watching over me — and I am so grateful for it.

Becoming an Advocate

Since 2021, I’ve become involved in patient engagement and research. I’ve contributed to focus groups, speaking engagements, and advocacy with:

• HeartLife Foundation
• Ted Rogers Centre for Heart Research
• University Health Network
• Canadian Institutes of Health Research
• Heart & Stroke Foundation of Canada
• Canadian Women’s Heart Health Alliance
• Canadian Heart Failure Alliance

Through these opportunities, I’ve grown as an advocate and connected with communities that truly feel like “my people.” Online support groups have also been invaluable — spaces where I’ve learned from others’ experiences and shared my own. And through it all, my son Patrick has been my caregiver and my rock .

Facing a Stroke

On May 29, 2025, I suffered an occipital ischemic stroke. I lost sight in my right peripheral vision and can no longer drive. It’s been difficult to process, but through my advocacy I’ve learned how closely the brain and heart are connected. It wasn’t a complete shock, and I’m grateful to now be in a stroke recovery program. I still hold hope that one day I may regain what I’ve lost.

Moving Forward With Resilience

Managing heart failure is a daily challenge, but I am motivated to keep going — for myself and for others. I want to continue engaging in research and advocacy, and I truly hope to make a positive difference for people living with cardiovascular conditions.

The hardest challenges often bring opportunities for growth. Along my journey, I’ve met so many resilient heart and brain heroes whose strength inspires me.

I’ve learned this: the human spirit is resilient.

We can live full lives with gratitude, community, and a positive spirit — even in the face of adversity. But we can’t do it alone. Find your people. Connect, share, grow, and learn. Resilience will blossom.

At HeartLife, we’re honoured to share Paula’s story — a reminder of the strength, resilience, and hope that define our community.

The post Paula’s Story: Living With Heart Failure, Finding Resilience first appeared on HeartLife Foundation.

When my aunt passed away at the age of 52, I decided to get retested. I was immediately told I did indeed have HCM and it was advanced because my disease went untreated for the past 20 years. Shortly after that I had my first Internal Defibrillator (ICD) put in and on that same day my father (67) died while being #1 on the heart transplant list. Shortly after that my cousin (31) died. In one year I had lost so much and suffered enormous trauma. I was mad at them for leaving me alone when I needed them most. I was 39 years of age.

Six years later I had a sudden cardiac arrest in my living room. Not knowing what to do, I went to bed, got up in the morning and drove myself to work. A friend insisted I call my cardiologist who promptly told me to get to the ER immediately. I was started on Amniodarone (which I stayed on for 12 years) and suffered for months from the side effects.

The next year the wires on my ICD broke and while conscious I was shocked 6 times. I have never been so terrified in my life, this thing in my chest that was supposed to protect me was causing me pain and there was nothing I could do about it. I wanted to rip my ICD out of my chest. While in hospital I was shocked 2 more times before my ICD was turned off and I had a laser lead extraction to remove the faulty wires. At a checkup a month later it was determined that the new ICD wasn’t working so I had the surgery again.

In 2018 I started to suffer shortness of breath, bloating, sudden weight gain and severe fatigue but my cardiologist kept reassuring me it was not my HCM. It was my weight, my age, my sex, my hormones or what I ate. After a year of complaining I ended up in the ER where I was advised my HCM was end stage, I was in severe heart failure and I was being referred to the heart transplant team in Vancouver, BC.

I quit alcohol, changed my diet, started going to yoga 5x a week, took up ocean kayaking and meditated regularly. With those changes and the care and treatment from the transplant team I got an extra 6 years with my original heart. In October 2023 (2 days after returning from a trip to Europe) I was advised it was time for transplant so I went through two months of extensive testing. I was listed for transplant on January 23, 2024 at the age of 57 and received my first phone call on April 3, 2024 but the heart was not viable. My family was devastated as they worried that I wasn’t going to make it to receiving a new heart. They watched me fight infection after infection and develop severe anxiety. I received a second call on November 14, 2024 but an hour before surgery they again told me the heart wasn’t viable. I finally received my transplant on December 1, 2024. Unfortunately, 5 weeks later I was back in the ER with a massive cardiac effusion that needed to be drained. I’m 7 months post transplant and struggling to learn how to live a completely different way in every aspect of my life. It’s a slow, frustrating, emotional, overwhelming journey but I know it’s all leading to a long life filled with a lot of love, laughter and new adventures.

During the past 7 years I didn’t let my health stop me from living. I’ve climbed up a live volcano in Bali to watch the sunrise above the clouds. I marvelled at the Giants Causeway and huffed and puffed up and down the Carrick-a-Rede Bridge in Ireland. I climbed up high hills in Hawaii, kayaked the Colorado River fighting 65mph winds. I went to France and walked the insanely steep roads of Mont Saint-Michel Commune, I hiked 300 feet up the White Cliffs in Etretrat, and I saw the Eiffel Tower in Paris. During all my transplant testing I even managed to sneak in a trip to visit New Orleans for New Years Eve. My next trip will be visiting Mexico for the Day of the Dead.

The post Lise first appeared on HeartLife Foundation.