Living with hypertrophic cardiomyopathy

Audrey Sawyer is monitored at the Montreal Heart Institute for hypertrophic cardiomyopathy, a disease that is often genetic and stiffens the heart muscle. It can also hinder blood flow and increase the risk of complications, especially during intense exertion. As a result, Audrey’s life was upended and she had to refrain from any physical activity. Unfortunately, the disease progressed so much that even climbing a few steps turned into a challenge. She felt in a different world from her friends. 

Audrey was monitored at Sainte-Justine until the age of 18 until her case was transferred to the MHI where she fell under the care of Dr. Denis Roy. She was a young adult, and she refused to undergo open-heart surgery. 

Audrey was 24 when she underwent her first open-heart surgery, which had by then become inevitable. The procedure was carried out by Dr. Denis Bouchard. It was a difficult surgery with a recovery marked by thoracic pain. A few days following the procedure, Dr. Bouchard visited her to get an update on her condition. “It’s an image that really marked me. Here was Dr. Bouchard on his day off, making sure I was doing well. The experts at the MHI are really dedicated,” she said. 

The first surgery was also a turning point for Audrey who soon discovered the joys of running, something she had always believed impossible for her. Experiencing a semblancy of a normal life led her to consider becoming a mother. “It was now or never. Even if they told me the risks were high and there was a chance something would go wrong.” 

When she became pregnant, Audrey experienced uncontrollable arrhythmia episodes. Her spouse had to bring her to the MHI several times to undergo cardioversions, a procedure that administers a small electrical shock to the heart to help it beat normally again. 

She miscarried three times. With her fourth pregnancy, everything changed in the second trimester. “My pressure dropped drastically and I had to head to the emergency room at the MHI. I visited the ER 19 days in a row. During that time, I used my health insurance card more often than my credit card. Everyone in the ER knew me.” 

Despite being implanted with a pacemaker, she needed to be hospitalized. Audrey found herself at a crossroads because pursuing the pregnancy would put her life in danger. At 22 weeks, interrupting the pregnancy became her only viable option.  

Following this episode, Audrey learned how to tailor her lifestyle to her heart condition. She had to undergo a new ablation every four or five years. She even planned her travels around these procedures. Because travelling was a passion of hers, she refused to give it up. But she soon had to learn to adjust her itineraries to compensate for her deteriorating physical abilities. 

Her sense of adventure made her constantly push her boundaries. Her spouse for his part had to continuously deal with a sense of uncertainty and unpredictability.   

Even though Audrey’s pacemaker was replaced during the pandemic, she had a feeling that a heart transplant was on the horizon. After years of living with her disease, she felt ready to confront the next step. 

This was confirmed during a trip to Disney where she had to rely on a wheelchair for the first time in her life. Walking had become beyond her capacity. It was time to deal with the reality of her situation. 

In July 2023, Audrey worked with the transplant team to begin the assessments necessary in view of a transplant. She underwent numerous tests over the course of several weeks to confirm that she would be able to undergo the procedure. On December 12, Audrey was put on the heart transplant list.  

Barely a month later, on a Tuesday in January, her phone rang. It was around 6:30 p.m. Amélie from the transplant team was on the line. “Do you know why I’m calling you?” Audrey knew. 

She was ready. 

Because Audrey had already undergone open-heart surgery once before, she knew what to expect and headed into the procedure without any fear. She was hospitalized at the MHI for two weeks and progressively began exercising again thanks to a stationary bike in her room.  

But what she hadn’t considered was the post-surgery recovery. She found it slightly overwhelming to manage all her new medication and their side effects which included shaking, digestive issues, and migraines. 

She progressively came to terms with her new reality thanks in part to the MHI’s Patient-Partner program which also played a key role in her recovery. Audrey was put in contact with another patient who had gone through the same steps a few years earlier. She was able to share her experience and reassure Audrey as to what came next. 

Audrey began seeing the light at the end of the tunnel after two months. That’s when she was able to feel in control once more of her day-to-day-life. 

Over the years, Audrey has formed deep connections with the MHI’s experts who have supported her. Dr. Denis Roy, whom Audrey qualifies as an exceptional individual with immense patience, played a particular role in her journey, as did the transplant team who were by her side every step of the process. “They were with me from the start. They saw me at my worst and at my best. They are more than health care workers; they are people I trust unconditionally.” At the MHI, Audrey feels in familiar surroundings. She’s supported by a team with a human-centric, personalized approach and surrounded by experts she greatly admires.  

Today, her life has changed. Even though she still takes medication, their side effects have alleviated and every day she is enjoying a freedom she had thought lost. She runs almost every day. She does yoga. And, most importantly, she’s no longer afraid of being active. The limitations that previously hindered her life have vanished. 

She still loves to travel. In fact, she set off on another adventure a few months after receiving her heart transplant in 2024. It might have been a bit too early, she says with a laugh, but the impetus to live life to the fullest was too strong to ignore.