Jenny’s Lp(a) Story
I thought it was a panic attack. In fairness, I was only 41. A nonsmoker. A longtime vegetarian with good cholesterol numbers. As physically active as I could be while working a full-time job and wrangling a toddler.
But what happened in October 2019 wasn’t a panic attack. It was a heart attack. And it nearly killed me. I waited almost a day to go to the hospital. And the night I was admitted, my heart stopped. I was revived with chest compressions and wheeled into an operating room where it was discovered that my left anterior descending artery (the LAD, aka “the widowmaker”) was 95% blocked. They stented my artery, and, for a period, my heart was damaged enough to merit me wearing an external defibrillator, until time, medicine, and cardiac rehab workouts helped me improve from borderline heart failure to low-normal heart function.
“My Lp(a) was abnormally high.”
The whole thing left me stunned and terrified. Why had this happened to me? How could I be sure it wouldn’t happen again?
My primary care physician—who I’d only met for the first time a few short days before my heart attack—suggested additional testing. Among the labs she ordered was for something I’d never heard of before: lipoprotein(a), also known as Lp(a).
Days later, the results were delivered to my email inbox. My Lp(a) was abnormally high. Within moments of receiving the news, I started googling. What I learned was frightening. About 20 percent of the population has elevated Lp(a), a condition that is associated with an increased risk of heart attacks and stroke in otherwise healthy, often young, people. There is no medication on the market to directly treat it. A person’s lifestyle—staying active, following a balanced diet, not smoking—doesn’t affect Lp(a) levels. As an article I discovered in Scientific American put it (rather depressingly, in my opinion): “20 percent of heart attacks are not preventable.”
“I wondered if I’d be around long enough for my young son to develop memories of me.”
Family Heart Foundation research shows that less than 1% of Americans have ever had their Lp(a) tested, even though the medical community has known about Lp(a) and its connection to cardiac disease since the 1960s. Unlike Canada and Europe, the U.S. doesn’t have specific guidelines surrounding testing for this important genetic risk factor, so it goes untested.
What I read made me scared. Sad. Reeling. Worried for my future. Wondering if I’d be around long enough for my young son to develop memories of me.
I thought about my dad. He’s always been an active person. He’s an avid cyclist who happily rides every day, weather permitting. A gym rat. A marathon-runner. Handy with power tools and car repairs. Before he retired, he was a quintessential workaholic. And so, when he had a heart attack in his late 40s, we all chalked it up to his Type A, driven personality. And then, 10 years later, he had a second heart attack. Five years after that, another.
In spring 2019, my dad was out cycling with friends from his bike club when they stopped for coffee. He was in the cafe when he collapsed. He’d gone into cardiac arrest.
Against the odds, my dad’s life was saved by bystander CPR. At the hospital, he was outfitted with a pacemaker and a defibrillator. His doctors told him that there might be something genetic at play, and that his children—my sister and I—should get baseline health assessments. But no one ever discussed Lp(a) with him. Until me.
“I wish it hadn’t taken me nearly dying for us to gain this understanding of our family’s health risks.”
Turns out my dad does have elevated Lp(a). So does my son.
I wish it hadn’t taken me nearly dying for us to gain this understanding of our family’s health risks. I wish that I’d known earlier about my Lp(a) number and what it could mean for me. Had I known my Lp(a) was high, I would have taken my heart attack symptoms more seriously, and I would have acted earlier when I first felt that something was off. Maybe, by acting more quickly, I would have incurred less damage to my heart. Or maybe, by knowing my risks, I could’ve taken steps to prevent my heart attack from ever happening in the first place.
I try not to get too caught up in those maybes. Instead, I try to control what I can. While lifestyle can’t directly impact Lp(a) levels, doctors advise patients to manage any other risk factors. So, I do my best to take care of my mental and physical health. I take blood thinners and LDL-lowering meds and stay in close contact with my primary care physician and cardiologist. I see a personal trainer twice weekly. I stick to my vegetarian diet and limit sodium and saturated fat. I’m enrolled in a drug trial that could lead to treatment for elevated Lp(a). And my son, now 5, has an annual appointment with a pediatric cardiologist so that we can monitor his health and address any concerns proactively.
“I once felt hopeless about the future, these days, I feel optimistic.”
The same googling that led me to so many articles outlining the dangers of Lp(a) also led me to discover the Family Heart Foundation. It’s heartening to witness the organization's work around improving how we understand and treat Lp(a) and familial hypercholesterolemia (FH), and I feel incredibly grateful to support its efforts as a Family Heart Advocate for Awareness. While I once felt hopeless about the future, these days, I feel optimistic—for myself, for my child, and for all people with elevated Lp(a).
Advocate for Awareness
Family Heart Foundation
Jenny W. is a Family Heart Foundation Advocate for Awareness. If you're interested in joining the Family Heart Foundation as an Advocate click here to learn more.