Olivia was exhausted from standing for so long. She couldn’t catch her breath and her heartbeat was erratic. It felt like blood was running down her arms and legs. She and Olivia were also training for a half marathon. Despite increasing her exercise, her weight increased by 15 pounds. Her skin was also greyish.

Olivia received emergency treatment. Her doctor told her it was gastroesophageal reflux disease, a chronic disease in which stomach acid rises into the esophagus. Olivia wasn’t convinced. She had never had any digestive problems before.

Two weeks later, halfway through a 12-hour shift, her boss sent her home to rest. She was eventually taken to a hospital in Boston, where her heart was beating 135 times per minute. (The normal resting heart rate for most adults is 60 to 100 beats per minute.) Tests revealed that her heart was enlarged.

She then went into cardiogenic shock. Her heart rate was slow and her medical team was unable to measure her blood pressure.

They were able to stabilize her condition, and the next day her doctors delivered the news: “She has heart failure, but they don’t know why.”

Relieved that at least she had a diagnosis, Olivia asked, “What can I do to feel better?”

“You need a heart transplant,” the doctor said.

Five days later, she had a left ventricular assist device (LVAD) implanted in her chest. The battery-controlled device essentially pumps blood to replace the diseased part of her heart. This is often used as a “bridge to transplant” but can also be a long-term solution.

A year and a month later, Olivia called. Her doctors prepared her for her surgery. However, when she woke up from anesthesia, her incision was not there. It turned out that the donor heart was not as compatible as originally thought.

She was on the ferry back to Martha’s Vineyard when the phone rang. “Please come back,” the doctors said. There was another heart. She flew to Boston and hours later, at age 22, received a successful heart transplant.

The next few months were difficult. She was in and out of the hospital. Her body began to reject her new mind. Medicine helped.

Olivia was also depressed. She thought about her donor, a woman who had overdosed. “It was an all-encompassing sense of survivor’s guilt,” Olivia said. “I was really worried about how I was able to survive.”

While in the hospital, Olivia had a revelation. She found the next step she was looking for.

“I want to go into medicine,” she told her mother, Sari, who was at her bedside.

Three months and one day later, Olivia began working as a medical clerk at a local hospital, then as an emergency medical technician, medical assistant, and medical technician.

About seven years later, Sophia went to work on a horse farm near her home. As the only employee taking care of 13 horses, it was somewhat understandable that she was exhausted, sore, and out of breath.

Considering how much time she spent outdoors and in the woods, she thought she might have Lyme disease.

But she noticed something else strange. Even though she was more active than ever, she was gaining weight.

One day, Sophia felt weak and short of breath after putting a blanket over a horse and scrubbing a water bucket while she was at work. She ended up being taken to the emergency room of the hospital where Olivia worked. Sophia let her sister know she was there.

Sophia told doctors she thought she had Lyme disease. She tested the electrical activity and structure of her heart and found that she did not.

The doctors broke the news to Olivia. She said to Sophia, “So you’re going to Boston. You have advanced heart failure.”

The next day, Sophia was airlifted to the same Boston hospital where Olivia was treated. She went to the cardiac intensive care unit. She said the same doctor who performed Olivia’s heart transplant told her Sophia needed one too.

Sophia began treatment for heart failure. Doctors hoped that perhaps this would stabilize her condition and eliminate the need for an LVAD before her transplant.

However, Sophia’s health deteriorated. In late 2022, she underwent emergency surgery to implant her LVAD.

Although it was scary, it helped knowing that I had the support of my twin sister, Olivia, who was living with the device.

More than a year later, Sophia’s heart is still powered by an LVAD.

“LVAD and I get along very well,” she said.

She nicknamed the song “Janis Joplin 2.0” after her favorite singer.

After Olivia’s ordeal, no one considered genetic testing.

After Sophia’s ordeal, it made sense for the first time.

In fact, tests revealed that they had a rare genetic mutation that caused their hearts to enlarge and then worsen. This condition is called irreversible dilated cardiomyopathy, or DCM. It occurs when the heart chambers enlarge and cannot pump blood properly.

Finally, Olivia learned the cause of her own heart failure years ago. It turned out that their mother also had a defect, but she did not get sick. Her sister Julia doesn’t have the gene, and her brother Jake hasn’t been tested.

Sophia is not on the transplant list. First, she wants to rebuild her finances and prepare herself both physically and mentally. Learning from her experience with Olivia, she realized, “My donor is alive today, and the day I go for the transplant, I know that person’s life has ended that day.”

In the meantime, she has been channeling her feelings online and sharing her story on social media. Her best friend encouraged her to post a video about her health journey.

“I made that video for myself,” Sophia said. “But if you can help yourself, you can help a lot of other people too.”

Her first video went viral, racking up around 100,000 views. Sophia currently has 40,000 followers on TikTok. She chronicles life with an LVAD and what it’s like to be a heart patient, connecting with young people around the world who are going through similar experiences.

“It’s hard not to feel isolated and alone when you’re going through this,” she said. “Leaning into social media has really helped me.”

Her experiences also gave her direction. Like her sister, she also wants to work in the medical field and become an advocate for patients. “In my 20s, I didn’t have a path,” she says. “My whole soul changed on that plane. I knew the purpose of my life.”

Sophia lives in Boston and continues to speak about the need for more heart research and patient experiences. She hopes to someday start her own medical nonprofit and raise money to help her heart disease patients.

Olivia learned how to advocate for herself. “This whole process has been both a curse and a blessing, but now it’s even more of a blessing. I’ve never been more myself than when I’m practicing medicine.” I work as a lifeguard.

“Sofia and I now share the same goal,” she said. “We both want people to understand that they are not alone and that there are resources for them.”

Stories from the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers, and supporters.

Covering heart and brain health. Not all views expressed in this article reflect the official position of the American Heart Association. Copyright owned or held by American Heart Association, Inc. All rights reserved.