For years, doctors told Megan Kaverman her heart symptoms were nerves, her weight, and at one memorable low point, too much pizza. She was 27 and already in early heart failure when anyone finally took her seriously. Then she watched her sister start showing the exact same signs — and this time, she knew exactly what it was.
Years of Dismissal, Then an ICU Bed
Kaverman started having symptoms at 18. Shortness of breath. Weight gain nobody could explain. Her family doctor, according to CBS News, never figured out what was going on. So Kaverman got used to feeling bad. She adapted. She stopped noticing how diminished her life had become.
By 25, the fatigue hit hard enough that ignoring it wasn't an option anymore. She cycled through doctors. She made multiple trips to the ER. She was told her high blood pressure was probably just nerves. One physician, in a moment that should be framed in every medical school in America as a cautionary tale, suggested she eat less pizza.
"They just kind of pushed it aside, like, '(You're) too young to have a heart problem,'" Kaverman told CBS News. She was 27 when she finally refused to leave the ER without an answer. Tests confirmed she was in early heart failure. An intensive workup in the ICU revealed the actual culprit: heritable pulmonary arterial hypertension, a rare genetic condition she'd been quietly suffering from for nearly a decade while doctors shrugged at her.
What This Disease Actually Does
Heritable pulmonary arterial hypertension is not a condition that announces itself with obvious drama. According to the Mayo Clinic, gene mutations cause the small arteries in the lungs to narrow, which raises blood pressure and forces the heart to compensate by working harder. Over time, that extra strain breaks down the right side of the heart.
The heritable form is genuinely rare. According to the medical database Orphanet, fewer than one in a million people are diagnosed with it, and it accounts for less than 4% of pulmonary arterial hypertension cases overall. Here's the part that should make every ER physician sit up straight: about 70% of patients are already in heart failure by the time they get a diagnosis.
There is no cure. The disease can be managed with medication and treatment, but it doesn't go away. Kaverman sought care at the Cleveland Clinic, which she credits with returning her to something resembling a normal life. She started calling the day of her diagnosis her rebirth. The framing matters: after years of being told nothing was wrong, finally knowing the enemy felt like progress.
Then Her Sister's Legs Started Swelling
Two years after Kaverman's diagnosis, her sister Katie Gusching had just had her first child and started noticing she couldn't breathe while doing household chores. Climbing stairs at work was a struggle. Then her legs started swelling. Then, one day, her vision briefly went white.
Doctors found no blood clot but flagged high blood pressure, and Kaverman — who recognized every single symptom from her own years of being ignored — told her sister to ask specifically about pulmonary hypertension. CBS News reports that Gusching underwent the same diagnostic tests and got the same results. Same disease. Same genetic misfortune. Different decade.
"If she hadn't gone through hell and back to figure out what she had, who knows if I'd be here," Gusching told CBS News. That is not hyperbole. Kaverman's hard-won knowledge short-circuited what could have been another decade of dismissal and another patient arriving at diagnosis already in organ failure.
Clinical Trials and a 5K That Doesn't Leave Her Breathless
Both sisters now receive care at the Cleveland Clinic under pulmonologists Dr. Kristen Highland and Dr. Adriano Tonelli, and both have enrolled in clinical trials aimed at developing new treatments. Highland told CBS News she started working in pulmonary hypertension before any treatments existed. The field looks very different now.
"Now we have a lot of treatments. There's a lot more hope, and patients are responding to those treatments," Highland said. That is not a small thing. For a disease that was essentially untreatable within living medical memory, having options matters enormously.
Kaverman, now 36, told CBS News that a new medication has effectively given her a second life. She runs 5Ks now. The races don't leave her gasping. Gusching, 39, hiked over three miles last year — the kind of activity she assumed her diagnosis had permanently crossed off her list. The two sisters schedule their Cleveland Clinic appointments together when they can, carpooling and comparing results. They're planning a trip to the Dominican Republic for Gusching's birthday. "It's really nice to be able to do things that I wouldn't have done before," Kaverman said.
The Part Where They Turn It Into Something Useful
Kaverman has become an advocate for pulmonary hypertension awareness, telling CBS News she recommends anyone with unresolved cardiac symptoms push their doctor to consider the diagnosis explicitly. The logic is simple and devastating: if nobody had pushed for her, she wouldn't be here to push for anyone else.
"When I was sick in the hospital, I said, 'I want to get better so I can help advocate for the people that can't,'" Kaverman told CBS News. "If I save one person's life by bringing awareness, I've done my job."
The sisters share everything about the disease now — results, medications, insurance battles, the specific exhaustion of managing a chronic condition that most people have never heard of. "Katie and I have always shared a lot, and I just feel like this brings us closer together," Kaverman said. If you need a sentence to sum up the whole story, that's probably it.
The Dingo Take
A doctor told this woman to eat less pizza while she was in early heart failure. Let that sit there for a second. Not because physicians are villains — most aren't — but because what happened to Megan Kaverman is a textbook case of what happens when a young woman presents with vague symptoms and doctors reach for the easiest, laziest explanation rather than the correct one. Weight. Nerves. Diet. Too young. It took an ICU admission and a patient who refused to leave without answers to get a diagnosis that should have come years earlier.
The systemic problem here isn't mysterious. Women, and particularly young women, are chronically undertreated for cardiovascular disease. Their symptoms get attributed to anxiety, lifestyle, and stress at rates that would be embarrassing if the medical establishment spent more time being embarrassed about it. Kaverman's story is exceptional only in that it has a survivable ending. A lot of women in similar diagnostic spirals don't get that.
The genuinely good news, and there is some, is that the Cleveland Clinic's research is real and the treatment options are expanding. Gusching's early diagnosis — made possible entirely because her sister had already been through the fire — is proof that awareness can literally be the difference between catching a disease early and arriving at a diagnosis already in organ failure. Kaverman said she wants to save one person by raising awareness. The actual number is probably higher than she thinks.
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