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.
On your mark, get set, go
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.
Once their third kid, son Brice, arrived, her husband would come along on runs while pushing an additional stroller. They made it a whole family affair.
Jarvis' love of running flourished after she had her first child and would jog around the neighborhood with a stroller.
In her 30s, Jarvis began training for her first marathon. She'd get up super early to train before the kids woke up and her husband left for work. As these runs became regular, some of her neighbors would rally in support. One would leave a Gatorade bottle in their mailbox so she could replenish those electrolytes at the midway point of a long loop.
Running always gave Jarvis an amazing feeling of invincibility, helping her shed the stress of the day. It also became an outlet for the whole family. As the kids got older, they would all run 5Ks on holidays. She and her daughter Madison ran the Disney Half Marathon together one year.
The first hurdle
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.
"A lot of people with ARVC may feel like they can't do anything, but that absolutely isn't the case," Kim says. Jarvis' exercise plan entailed milder activities that would keep her heart rate down and keep the durations shorter.
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.
Jarvis and Dr. Annie Van Beuningen after her successful heart transplantation.
One of the first pieces of advice that Van Beuningen gives to her advanced heart failure patients like Jarvis is that this is a progressive disease, which can go at differing levels of speed and cadence. If certain medications abruptly stop working three months into a treatment plan, she'll counsel her patients that it's no one's fault — particularly not theirs — rather things have shifted with their hearts.
"It's important to realize that how we manage something now might not be how we need to manage it in a couple of months, a year from now, or five years from now," she says. That level of uncertainty can be challenging at times and requires flexibility and a great deal of trust-building with her patients.
Breaking stride
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.
Getting a second wind
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.
Dr. Tamer Attia with Jarvis after performing her surgery.
Attia usually performs 15-20 transplantations per year, or about one or two per month, and considers it to be the most rewarding operation he performs.
"What's amazing is that you get someone who is extremely sick and frequently feels miserable. Then they get a transplant, and it's a day and night difference. Two or three days later, they're already doing so much better," says Attia.
The surgery went smoothly. Jarvis began two weeks of recovery in the hospital and almost immediately became a superstar patient. "She was doing squats in the ICU two days after her surgery," Van Beuningen says.
At one point, Jarvis was doing laps around the hallway to build her strength and stamina. As Attia came by on his daily rounds, Jarvis laughs, "He looked at me, and he said, 'I'm afraid if we open the doors, you're going to escape, and you're not going to come back!'"
Victory lap
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.
When Jarvis ran her first 5K post-surgery, she had to give herself a pep talk beforehand.
Finally, after four months, she got the green light from Attia to start jogging again — but only if she paced herself. That's when Jarvis realized she was officially "a rookie" again.
"I forgot to stretch when I got back. I went out back again the next two days, and then my ankle started hurting, so I just freaked my body out," she says. "I ended up doing physical therapy to strengthen my ankles."
Two months later, on her way home from her six-month biopsy, Jarvis remembers seeing a sign advertising a 5K race. She decided she would sign up but not tell anyone. "I was worried I might chicken out," she says.
The day of the race, she sat in her car for a long time, debating whether to do it — whether she was up for it. She took a deep breath and decided it was now or never. Just 40 minutes later, when she crossed the finish line, she called her husband, who was out of town for work.
"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.
Skiing with her now-grown kids and husband is something Jarvis wouldn't have imagined possible before getting her new heart.
In the last year since her transplant, Jarvis has traveled with her family, including a recent ski trip over the holidays. She has also become an active volunteer with Lifelink of Georgia, sharing information at various events about the importance of organ donation.
For her 60th birthday this year, Jarvis celebrated the best way she knew how: With another 5K. Then, on February 22, she moved up to her first 10K race post-transplant. This April, she'll be there when her son, Blake, gets married.
But it's not just these milestones that keep her jumping out of bed every morning, ready to embrace each new day. It's also all about the little, quiet moments. "Every morning, I'll sit down on my back deck and read, and I'll see a red bird in our yard — and it makes me appreciate being around to enjoy it all."