For the first half-century of her life, Gail Jarvis had no reason to worry about her heart — at least, not as far as she knew. She'd been extremely athletic all her life, practicing yoga and running marathons (including Atlanta and Boston).

But that sense of safety all came to a screeching halt for Jarvis when she was diagnosed in her 50s with a rare genetic form of heart failure: arrhythmogenic right ventricular cardiomyopathy (ARVC), a condition that's ironically often exacerbated and triggered by endurance exercise.

ARVC is an inherited heart condition that often lies dormant for years. It affects a patient's right ventricle, the lower chamber of the heart responsible for pumping blood to the lungs. And so, in midlife, Jarvis would face her toughest race of all — a marathon she never signed up for. This race required grit, agility, a competitive mindset and a full team of Emory providers to help guide and cheer her along through each obstacle.

A metro Atlanta native, Jarvis grew up in Sandy Springs and graduated with a bachelor's degree from Kennesaw State University. She worked for a couple of years in advertising sales at the Marietta Daily Journal before becoming a stay-at-home mom.

Jarvis did track & field when she was a teenager but didn't fall in love with running until she began having kids — three, all in their 20s now. When her oldest daughter, Madison, was first born, going for a few laps with a running stroller seemed to soothe both baby and mom. When Jarvis' second child, son Blake, came along a year or so later, she got a double stroller for her runs and toted both kids.

Unfortunately, life as Jarvis knew it would shift dramatically in 2013 in the wake of a family tragedy. Her cousin's teenage son was playing basketball and collapsed from sudden cardiac arrest, later dying in the hospital. It was a devastating alarm bell that resounded across the family. At the advice of their physicians, the whole family got tested for congenital heart disease.

Sadly, it turned out that both Jarvis and her son, Brice, had the same ARVC gene. As a precaution, Jarvis's doctors advised her to assemble a heart team well before she'd even need them.

Jarvis started with regular visits to see Jonathan Kim, MD, Emory's lead sports cardiologist, who served as a guide on safer forms of exercise and competition. Kim often works with athletes facing serious health challenges and emphasizes the importance of listening to your patients and creating a careful, customized plan that lets them keep as much of what they love as possible.

As an example of one modification, Kim recommended that Jarvis try golf for the first time. "I think I rolled my eyes at first," she says, laughing. "I was like, are you kidding me? Which is funny because now I love it."

Her visits with Kim began in December 2019, and for several years, nothing major happened. Jarvis had no symptoms and seemed fine. However, with the ARVC genetic mutation, vigorous endurance exercise like marathon running can sometimes accelerate disease progression, Kim says.

Indeed, when Jarvis first found out she couldn't run anymore, it felt a bit like grief. She would go for walks early in the morning or late at night so that no one could see her crying as she went. "Every morning on my walks, I would just pray to God asking to be healed so I could run again," she says. 

Since her right heart ventricle was abnormally large and its function had decreased over time, she struggled with arrhythmias. In 2021, Jarvis began to experience shortness of breath that worsened to the point where she couldn't go up the stairs to do laundry.

The team at Emory recommended that Jarvis get an implantable cardioverter defibrillator (ICD), a small device placed just under the skin to monitor irregular heartbeats. At that point, she also consulted advanced heart failure cardiologist Annie Van Beuningen, MD, at Emory.

By the time 2023 rolled around, Jarvis started to live through the kind of heart failure progression that Van Beuningen had warned her could happen.

She began to experience what's called incessant ventricular tachycardia, a cardiovascular condition that causes the heart's lower chambers to beat abnormally fast (100 beats per minute or more). This life-threatening condition can last for hours and recurs despite repeated attempts to stop it.

At that point, Van Beuningen and her team moved Jarvis to the transplant list. Although this was scary on some levels, Jarvis says she was by that point at peace with the reality that a new heart would be the only way forward. Up until then, it had felt like she was living with a ticking time bomb beating in her chest. It was like trading one uncertainty for another, somewhat better uncertainty.

Unfortunately, the road to a transplant proved rockier than expected. Because of the antibodies built up in Jarvis' system after having three kids, her chances of finding a match for a donor were reduced to less than two percent. When she found out about the slim prospects of finding a match, Jarvis remembers leaving work early to go home and sob.

This unforeseen development also shattered Van Beuningen; her stomach sank as she looked through Jarvis' test results. However, she was determined to find another way and recommended that they try a therapy that would be similar to chemotherapy as a way to lower Jarvis's antibody count. Maybe that way, they could buy more time.

But that plan had yet more hurdles, including the difficulty of getting insurance to cover the treatment. Determined, Van Beuningen worked tirelessly on Jarvis' case, sending peer-to-peer appeals and writing letters on her patient's behalf.

“She never gave up on me, and she worked so hard to help me get to where I am today,” Jarvis says.

As they waited, Jarvis tried to stay upbeat. She remembers attending a glassblowing class that her daughter, Madison, had gifted her. They worked together to craft matching ceramic hearts and, somehow, Jarvis felt warmed by this shared activity, which took her mind off the uncertainty around whether she'd ever get the flesh-and-blood heart she sorely needed.

And that's when the miracle happened.

Just before Valentine's Day 2024, "We got this one-in-a-million phone call that there was a donor who matched," Van Beuningen says.

On Feb. 13 (coincidentally, her mother's birthday), Jarvis picked up the phone and learned that her two percent odds had come through with a win. She carefully steadied her shaking hands as she dialed her 86-year-old mom to bestow the best of all birthday gifts: the news that this long-awaited surgery would finally happen.

"She just screamed and started crying, too," Jarvis says.

Jarvis relayed the news to her overjoyed husband and together they grabbed her go-bag — one she'd packed months ago — and zipped over to Emory University Hospital to be there as soon as the operating room was prepped. Friends and family — including all her kids and her husband — gathered around her, all shedding joyful tears.

And so, on Valentine's Day 2024, Emory cardiothoracic surgeon Tamer Attia, MD, successfully implanted Jarvis' new heart in an operation that often takes eight to 12 hours. It's one of the longest procedures that the heart transplantation team conducts — requiring up to nine clinicians in the room, including technicians and nurses — but it's also one of the most rewarding that Attia performs.

A few months after she left EUH at the end of February, Jarvis asked Attia if she could start running again. It was a request that Attia says required careful evaluation. "You need to walk before you run, literally," he says.

One of the risks of picking up exercise right away is the question of whether the patient's bones have fully healed. Heart transplantation requires cutting open the torso, requiring a delicate and vital healing process that can often take six to eight weeks in a best-case scenario.

Although running is an unquestionably great exercise for a new heart, Attia also wants to prevent his patients from tripping and falling accidentally — and reinjuring their ribcage. "Even if a patient falls on their arm trying to protect themselves, it's going to impact the clavicle all the way to the stomach, thus touching where the incision was made," he says. 

"He was like, 'You did what?' I took a selfie with my race number on, and we were both practically in tears. Then I sent it to my kids, and they're like, 'Mom, why didn't you tell us?’ And I was like, ‘Well, I was afraid I wouldn't be able to do it.’"

Looking back at all the ups and downs she’s been through in this most recent chapter of her life, Jarvis says two key pillars carried her through: Her faith in God, and the unwavering support of a medical team that believed in her.