By Jessica V. and the SADS Foundation
Published December 2, 2025 | 15 minute read
Jessica swings into the saddle and heads out with her daughter for a 50-mile endurance horseback ride. From the outside, it might look like any other long-distance ride – but Jessica is doing it with a new heart after surviving cardiac arrest and years of misdiagnoses.
“Something’s wrong with my heart”
Jessica’s earliest memories of her heart go back to childhood. At nine years old, lying in bed at night, she could hear and feel her heart “skipping beats” in her ear. Her mom, an ER nurse, took her to the doctor. They did tests and told her family she had premature ventricular contractions (or PVCs) – extra beats that were brushed off as a “normal abnormality.”
“I’ll never forget that phrasing – what the heck is a normal abnormality?” says Jessica.
Assured by her doctor that everything was fine, Jessica became a track star, played soccer and tennis, earned her black belt, and competed in Taekwondo tournaments. In her teens and early adulthood, she started fainting. Once, she passed out while teaching a kickboxing class. As she went into college, she had episodes of tunnel vision and blacking out. Eventually she was told she was having panic attacks.
“For years I was told it was panic attacks. Deep down I knew something was really wrong with my heart.”
She accepted the diagnosis and kept going – even as her symptoms continued, and started to get worse.
If your tests are “normal” but your symptoms don’t feel normal, it may help to see an expert who regularly treats genetic heart rhythm and cardiomyopathy conditions. The SADS Foundation can help guide you toward the right kind of care team for you or your child. Get in touch 👉
“I was in V-tach at my desk”
After college, Jessica worked at a law firm in California. Her symptoms were getting harder to ignore. She was blacking out at her desk. She felt constantly exhausted, sometimes even nodding off in the car on the way home from work. Then one day, she simply couldn’t wake up fully. She dragged herself to the ER with a friend, complaining of chest pain, shortness of breath, and a racing heart.
She sat in the ER for about an hour and a half before anyone ran an EKG.
“When they finally did, everything changed,” she says. The ER staff realized she was in ventricular tachycardia (V-tach) – an extremely dangerous, fast heartbeat – with lots of PVCs and ectopy (extra or skipped heartbeats that disrupt the normal rhythm). Suddenly, the doctors were panicking.
What followed was a whirlwind: MRIs, echocardiograms, and more testing. One doctor told her mother that Jessica had “heart cancer – something he said he had never seen before. Eventually the label became “idiopathic cardiomyopathy.” She was started on beta-blockers and told the medications would fix it.
For a while, she did feel better. But the underlying problem still had never been named – or correctly diagnosed.
Sudden cardiac arrest on the mountain
Years later, Jessica was getting ready to take her nursing boards while planning her wedding – two of life’s biggest stressors. On a day that should have been ordinary, she headed out for a hike with her mom to blow off some steam. A mile up the trail, Jessica turned to her mom and said she didn’t feel well. She ended up on the ground, then on her back, seizing – and then she stopped breathing.
Her mom, the ER nurse who had watched her daughter’s heart journey for years, started CPR. That decision, and her training, saved Jessica’s life: she’d experienced Sudden Cardiac Arrest. It took 45 minutes for help to reach them in the backcountry. Jessica remembers waking up and telling her mom she felt like she was dying.
“My mom’s CPR and emergency training saved my life on that mountain. Without her, I wouldn’t be here.”
After her Sudden Cardiac Arrest, she finally received an ICD. But she still didn’t have a precise diagnosis – only a device, medication, and a history of terrifying symptoms.
Living with an ICD – but no real answers
Jessica threw herself into her work as an ICU nurse. She got married. She stayed active, including martial arts, hiking, biking, riding horses and working out. Her ICD delivered multiple inappropriate shocks, adding trauma and fear on top of her already complicated relationship with her heart.
When she and her husband started thinking about a family, she underwent genetic testing. At that time, no specific genetic variant was found. They had two daughters, but stopped growing their family after her second pregnancy because of worsening arrhythmias.
Her girls were followed by a pediatric cardiologist and screened regularly. For years, there were still no clear answers. The turning point came when children’s pediatric cardiologist/electrophysiologist asked if he could review Jessica’s medical record. After evaluating Jessica’s echocardiogram he believed he had a diagnosis.
“It had only been five years since my last genetic test. I couldn’t believe that in five years, they finally found the genetic cause of my condition.”
He suspected Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC – also known as ACM), and urged Jessica to repeat genetic testing. That second round of testing revealed the culprit: a PKP2 mutation, one of the known genetic causes of ACM. Both of her daughters tested positive as well.
“It had only been five years since my previous round of genetic testing,” says Jessica. “I couldn’t believe that in five years, they’d finally found the genetic cause of my condition.”
Her oldest daughter has already had arrhythmias. She now has a loop recorder, takes a beta-blocker, and is closely monitored. Even her daughter’s cardiologist acknowledged how unusual it is to see such significant arrhythmias at such a young age – but Jessica knew from her own story that ARVC can progress early for some people.
For many families like Jessica’s, a repeat round of genetic testing can finally reveal the underlying cause of an inherited heart condition. The SADS Foundation can help you learn what genetic testing involves, how to talk with your family about results, and how to find specialists familiar with conditions like ARVC/ACM. Get in touch 👉
“My transplant gave me my life back”
ACM is a condition that often targets the right ventricle, slowly replacing muscle with scar tissue. In Jessica’s case, the progression was aggressive.
Although her numbers and tests didn’t always look “severe” on paper, she felt worse and worse. She struggled to make others understand how sick she truly was – even some of her healthcare team.
With the help of her cardiologist, she ultimately made it to a transplant program in Utah. Right before her transplant, a cardiac catheterization finally revealed just how advanced her disease was: her right ventricle was almost entirely scar tissue, with hardly any muscle left. The left side was also beginning to be affected.
“My tests didn’t always look ‘severe’ on paper, but I felt worse and worse. I felt like I had to fight to make people see how sick I really was.”
Jessica remembers being told, like so many transplant candidates, that transplant is “a treatment, not a cure – that the medications are intense, and life post-transplant can be hard. All of that is true. But one cardiologist did tell her, “I know what others have told you, but I think you will feel better after transplant.” She wished she had heard that more.
Six weeks after her transplant, she already felt better than she had in years. That change gave her strength and hope to push through the recovery period.
Finding people who really understand
During her transplant journey in Utah, Jessica met other women around her age going through the same process. Those friendships have lasted.
“For most of my life – even though I’m a nurse – I’d never met anyone else with my condition, or who was going through a heart transplant so young,” she says. “Connecting with people who truly understood was life-changing. If you’re facing transplant, find someone who’s been there – especially someone with a similar diagnosis. It makes all the difference.”
You don’t have to go through this alone. The SADS Foundation offers support groups, online communities, and one-to-one connection opportunities for patients and families living with genetic heart conditions. Get in touch 👉
Back in the saddle: endurance rides with a transplanted heart
Today, Jessica is doing what she loves again: endurance horseback riding. Before transplant, she could only manage the shortest rides. Now, she races distances of 50 miles and beyond.
Jessica and her care team are working to help her daughters find healthy, safer activities outside of endurance sports, while still honoring their love of horses and movement.
When Jessica talks to other riders, her stories are now about more than just mileage and terrain. They include awareness about her family’s new normal – ICDs, loop recorders, and emergency plans. But they’re also about joy, adventure, and gratitude – for the new heart beating in her chest, and the support of her family, friends and doctors who helped her throughout her journey.
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