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what it feels like: heart failure and the pursuit of 'a certain quality of life'
6 minute read
aubyn baker-riley takes meds every day, twice a day for her heart and copes with the side effects of fatigue and weight gain. she wears a smartwatch to monitor her heart rate, so if it’s low or high, she’ll be aware and modify her activity.
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at just 40 years old, aubyn baker-riley of ottawa was taking her garbage can to the street end of her long driveway. her 80-year-old neighbour was doing the same chore across the road and said hello, but aubyn could only wave back.
“i waved because i was too short of breath to say ‘hi sam.’ i thought there’s something wrong with this picture. he’s 80 and i’m the one out of breath,” she says. concerned, she called a friend who wondered if it could be her heart. this got aubyn worried, thinking back on the dizzy spells she’d had when she was pregnant with her son and then her daughter, difficulties during their delivery and all the times she felt tired and light-headed as a busy working mom. she went to her family doctor who referred her to the university of ottawa heart institute.
“we as women specifically, we tend to downplay our medical concerns. we’re moms, we’re working, we’re taking care of the house. we’re doing all this stuff, so we feel dizzy every once in a while, whatever,” she says. “we don’t take it as seriously as we would for our kids, our parents or our husband. we just kind of mosey along and think we’re fine.”
she was diagnosed with heart failure, a chronic, progressive syndrome where the heart weakens over time and needs long-term management. certain conditions, like narrowed arteries in the heart or high blood pressure, gradually leave the heart too weak or stiff to pump blood properly. when this happens, blood often backs up and fluid can build up in the lungs, so you have shortness of breath.
aubyn is now 61, retired from social work and living with her husband in brockville, ont. (still within a relatively easy drive to ottawa for heart failure treatment and monitoring). she knows what it’s like to have to manage her energy expenditure. she uses the spoon theory: each day she starts out with 10 spoons, where she uses one spoon to shower, one spoon to make breakfast and so on, as a way to let her family know how she’s feeling and what she can handle.
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from a congenital heart defect to heart failure
she was born with a congenital heart defect, a condition that had her parents “walking on eggshells” because back then, doctors didn’t really know if children would survive. she would tire quickly and couldn’t participate in physical activity, or she would faint. her life had a turning point early on with open heart surgery at age seven. her case has been written about in textbooks, she says. but what she remembers most? “my parents told me that i was fixed.”
after recovery, she lived a pretty normal life with annual checkups for blood work and tests with a cardiologist for monitoring until she was 18. then she was discharged, a liberating moment to be just as “invincible” as other young adults.
could her congenital heart defect be a reason for her developing heart failure?
“more of us, us being congenital heart patients, are being diagnosed with heart failure, so i would say yes, but that’s a question they’re trying to figure out,” aubyn says. “the one affects the other in the sense that our hearts are not like everybody else’s hearts. they’ve been poked and prodded, and in my case, in many cases, they’ve been operated on. so, it’s possible to assume that a technically broken heart would then break more as we get older.”
and 20 years ago, there was no congenital heart doctor for adults at the heart institute. she was seen first by a retired pediatric congenital heart doctor. “he told me that he didn’t know what to do with a 40-year-old congenital heart patient because in the past we didn’t live to be 40. i was petrified.”
tests followed and she had a cardiac ablation, a procedure that uses heat or cold energy to create tiny scars in the heart to correct the parts of your heart that aren’t working or causing problems. but for aubyn, the team couldn’t get into the problem part and she would need to wait for a new lab that was coming to the facility for a repeat of the procedure.
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in the meantime, she started a heart failure medication that came with challenging restrictions, like staying out of the sun (difficult for family camping) and side effects like extreme fatigue. “i worked part-time, and i would come home and crash was basically all i could do.”
a year later, she had the procedure in the new lab with advanced equipment, and it was successful.
“i was pretty much symptom-free for 12 years. from where i sat, i’d been fixed again,” she explains, adding she kept up with regular appointments for monitoring.
then out of the blue, 12 years later, she began feeling lightheaded and out of breath at times. the family was on vacation in northern ontario when she got the call about a test result that her heart was in trouble.
“it was a kick in the pants honestly, i didn’t know it was borrowed time. if i had, i might have done something different. i didn’t really know that there was an end to this. and neither did [my doctors]. they had no real idea how long it was going to work out.”
trial and error with medications followed, along with a need to know more. aubyn went to conferences, connected with heart failure patients online and in person, and started to ask a lot more questions about what works and what doesn’t and what heart failure means for people.
“i’m not 80 and i want to live a certain quality of life.” she takes meds every day, twice a day and copes with the side effects of fatigue and weight gain. she wears a smartwatch to monitor her heart rate, so if it’s low or high, she’ll be aware and modify her activity.
“i know when things are going a little off and i need to sit down. so if you’re standing up, you sit down, if you’re sitting down, you lie down, it’s a progression. you learn to know what your own body is saying. i’m much more aware of what my body is telling me than probably a lot of people are.”
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heart failure isn’t just one attack
dr. justin ezekowitz is a cardiologist in edmonton, alta. and president of the canadian heart failure society, sending a message to people of all ages to be aware of these symptoms and get screened for heart failure, which can be done by a blood test.
“unlike many other acute conditions where the risk, once it’s dealt with it’s done, it’s gone, these patients face a chronic disease in which there’s always going to be a risk,” dr. ezekowitz explains of the acute attacks of heart failure symptoms. shortness of breath, swelling, fatigue and chest pain can be life-threatening and require medical attention.
people in their 20s and 30s are experiencing heart failure, so this is not just a concern for seniors in our population. and while there’s no cure, innovations in treatment are helping people live longer and better, when they’re on top of their care, he says.
“if people stop their therapies or other things happen along day-to-day life, such as they get the flu, they’re at much greater risk for bad things happening, and we really have to re-emphasize this at every clinic visit with our patients.”
there are more than 800,000 people living with heart failure in canada, and 120,000 are expected to be diagnosed this year.
heart failure awareness week is may 4 to 10, 2025. visit the canadian heart failure society for information, tools and resources.
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