heart failure in your 20s: not just an 'older person's disease'
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jenny milne's asthma that started at puberty was likely early heart failure, her cardiologist says.
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jenny milne, a 29-year-old living in chilliwack, b.c., is an old soul. she’s reflective and thoughtful, approaching life with a sense of perspective and awareness that feels far beyond her years. maybe what happened to her seven years ago happened for a reason.
she grew up competing in figure skating and had her first skates before she turned two. her asthma, which started at puberty, didn’t stop her from doing all the dedicated training at the rink.
“my grandma got me my first pair of skates, and they couldn’t get me off the ice. i loved it so much. it’s always been my happy place,” she says. the best part wasn’t wearing dramatic costumes or medaling at events, but the camaraderie of her teammates at her local club. she’s visited one of her close skating friends who moved to london, england and also keeps in touch with her skating coach.
while she left the skating world in her late teens, she’s always been physically active and healthy. then the pandemic shifted things. she was laid off from her city admin job and was working at a temporary clerical job when she woke up one morning with pressure on her abdomen, almost like intense gas pain. by midday, any movement felt excruciating.
unusual symptoms and extensive testing
she went to the er in the early hours of the following morning, marking the start of a long investigation. blood tests showed her white blood cell count was oddly high, and an ultrasound didn’t show any fluid in her abdomen, but her gallbladder wasn’t functioning as it should. she went home without any answers.
her family doctor followed up with her and said she shouldn’t be in so much pain, so she returned to the er and saw a general surgeon who recommended a change in diet, cutting out red meat and eating more fish and fibre. more tests followed, but the gallbladder problem was still a mystery, and she was advised to have it removed.
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then jenny started noticing her shortness of breath.
“we were going to schedule my gallbladder removal for march 1st of 2021, so in about a month and a half. and i mentioned, i think my asthma is getting worse. i’m getting really short of breath. i don’t think an anesthesiologist is going to put me under.” she took a covid test that came back negative, and when she had a call with her family doctor, he asked her to press on her legs because she had noticed swelling in her legs.
“i’m like, what is happening? why am i so swollen? and i remember being on the phone with him. and of course, it’s a friday. i press on my leg, and it does the whole edema, like i’m retaining fluid.” her doctor saw her that day to listen to her heart and take her blood pressure.
“i’m very lucky that he has a very special interest in cardiology,” she says, adding that the assessment led to an electrocardiogram test to detect any cardiac conditions and a 24-hour heart monitor. “the results from the halter monitor showed that my heart rate did not go below 150 in that 24-hour period. i was running a marathon.”
no one’s heart should beat this fast consistently.
jenny went through more tests at the hospital that revealed her heart was enlarged, and two of her valves were leaking. “once it turned to my heart, i do remember being really scared but also being 23 and not understanding what was happening.”
diagnosed with heart failure
then she had severe chest pains and heart palpitations caused by a pulmonary embolism, a blood clot in her lung. she was later diagnosed with end-stage heart failure and prescribed blood thinners that she still takes today.
her symptoms were misdiagnosed as a non-functioning gallbladder, followed by covid for shortness of breath and asthma, delaying a critical diagnosis and reinforcing a dangerous myth: heart failure is not just an “older person’s disease.”
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she’s lucky she survived.
jenny is advocating for earlier detection, treatment and prevention for heart failure awareness week, may 3 to 9, with the canadian heart failure society, which issued a joint call to action with the canadian cardiovascular society to support young canadians living with heart failure. the call to action noted that hospitalizations for heart failure among adults aged 20 to 39 are rising, by up to 55 per cent, as the canadian journal of cardiology reported in 2020. and statistics from 2023-24 reveal more than 5,000 canadians aged 40 to 49 were newly diagnosed.
without greater awareness, younger people risk delayed diagnosis and missed opportunities for early intervention, just like jenny.
“one of the main reasons i wanted to get into advocacy is because you don’t see my face when you think heart failure. you unfortunately think of the old white man when you think of anything cardiac. it’s still prevalent in our older population, however, you can get heart failure at any age.”
most times, heart failure is treated by medication, but her case is complex. jenny had a biopsy of her heart that showed problematic fibrous tissue. this was linked to restrictive cardiomyopathy, where the heart becomes less able to pump blood efficiently and results in various health issues such as heart failure.
“i’m an extraordinarily rare case,” she says with a laugh. that is her normal, after all.
open-heart surgery and a will to thrive
she needed a critical heart valve replaced that would improve function and relieve the extreme pulmonary pressure in her lungs—or a full heart and lung transplant that can lead to scary long-term complications. the cardiac surgeon, with jenny’s enthusiastic consent, wanted to try the valve replacement. this meant open heart surgery on march 1, 2022 (a date firmly imprinted on her brain).
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“it was a whirlwind,” she says of the call she got five days before the surgery. but the procedure helped in more ways than her medical team anticipated. “it ended up that i was retaining 30 pounds of fluid. that’s why my gallbladder wasn’t working. once i lost the fluid, i have not had a single issue with my gallbladder.”
what does she remember most about open-heart surgery?
“being in the icu bed afterwards and my surgeon comes up to me and i’m obviously full of tubes, but one of those tubes specifically was to check on my lungs and see where the pressures were at. and the goal was to get my pressures just above normal. they never thought normal was possible,” she says.
“i remember him standing next to my bed, and he said, ‘your pressures have gone down to normal. you can go back to normal life.’” while she may need a transplant down the road, the immediate horizon was free and clear.
“i looked at this man, drug-induced, because i’m in a lot of pain. i just had my sternum cracked open. ‘you mean i can ride my bike again?’ turns out he’s a super avid cyclist, so he did end up chuckling and said, ‘yes, of course.’”
nothing is certain, which is the same for all of us. but for jenny, the relief of coming out the other side of surgery with positive news was like a door opening.
“it’s given me a purpose to be able to kind of to advocate for earlier detection and just listening to the non-textbook symptoms when it comes to especially young people and young females,” she says.
yes, she has to be gracious with herself because of the fatigue, but she’s able to cycle and hike, and enjoy life. she takes daily medication, including blood thinners, and goes in for regular screenings.
she went back to work six months post-surgery at an admin job, but also got involved in women’s health advocacy. in fact, she met the co-founder of the patient-led heartlife foundation, a two-time heart transplant recipient, at a vancouver conference in 2023 and soon joined the team. as the community engagement manager, jenny speaks at conferences, gets heart failure resources into clinics for patients and helps run peer support programs. she’s a model for people on how to overcome adversity and thrive.
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“it’s the dream job i never knew i needed or the purpose i never knew. it’s amazing. i love it.”
know your cholesterol, blood pressure and get your heartbeat checked
her message comes back to early detection and knowing your baseline numbers, like cholesterol, blood pressure and making sure a health-care provider listens to your heart. her doctors aren’t sure when her heart disease started, but her cardiologist is convinced that she never had asthma. it was a slow progression of heart disease. she says she would not have been in end-stage heart failure if it had been caught sooner.
now she describes her life as free and in the moment, the way many people would like to live.
“the first time i was able to just go and ride my bike, i had the biggest smile on my face and my husband’s looking at me like i’m this lunatic,” she says.
“one of the good things that’s come out of this is i get to live in the moment a lot more than i used to, which i’m so very grateful for. so me living in that moment, i’m riding my bike down this beautiful river trail that’s five minutes from our house. and i just have the biggest smile on my face going like, i’m doing this. i never thought i would be doing this again. i’m like, look at me now.”
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