At first, Maddie Price thought it was the flu.
Her chest tightened and her stomach ached after attending a baseball game with her family. The 15 year old chalked up her ailments to too many hot dogs.
But a few days later, as she was leaving a coffee shop, Price felt dangerously faint. She was rushed to the hospital close to her hometown in Palm Harbor, Florida, a bustling beach community near Tampa.
That’s where doctors gave Price the news: she needed a new heart.
Price was born with a congenital heart defect, a critical health condition that has resulted in more than 100 surgeries (including two heart transplants), countless doctor visits and upwards of 30 different pills a day.
Price had experienced chest pain before, but this felt different.
When doctors told Price her heart was failing, she was confused. “I was like, ‘No, you guys just need to rerun it. I have the flu. I know what it is, I’ve had it before,’ she tells PEOPLE. Heart failure can deceptively start out with flu-like symptoms: fatigue, nausea, back pain. “The doctors said I get similar symptoms a lot worse than most people, and my heart was just not pumping blood as much as it should.”
Soon after she was born, doctors realized Price wasn’t getting enough blood flow. She underwent open-heart surgery to replace her aortic valve and pulmonary valves at 2 1/2 years old. Although her blood flow improved, more surgeries would follow.
Price underwent her first transplant when she was about 5 years old. Though she doesn’t remember much. “I colored in my hospital room and hung out with my mom,” she recalls.
The surgery was successful, but doctors weren’t optimistic because Price’s body had a strong rejection reaction to the transplanted heart, and they told her it would be a difficult road to recovery.
Her first transplanted heart lasted a decade.
“Until I was a teenager, I thought, ‘Oh, this is normal. You go to the doctor every week, you get labs done, you take a ton of medicine two, three times a day,” Price, now 19, says. “It wasn’t until I started going to the doctor on my own that I really started to understand that this is a condition I’ll have forever, and I have to be responsible about it.”
Congenital heart defects result when the heart doesn’t properly develop after conception and are extremely rare: nearly 1% (about 40,000) babies per year are born with CHDs in the United States, according to the Centers for Disease Control and Prevention. February is American Heart Health Month, a federally designated event to raise awareness of heart disease, the leading cause of death in the United States.
Price faced several complications after her second heart transplant at age 16 that kept her out of school for months at a time.
She was given an adult heart over a child’s heart for the second transplant as she was nearly a full-grown teenager. But her body had to “grow into the new heart” since it was larger than what her body was used to.
The larger heart pressed on her lungs, making it difficult to breathe. Immunosuppressants, the rejection medication Price had to take so her body would accept the new heart, damaged her kidneys as they struggled to filter out the new medications and toxins.
“It was hard because I was trying to make more friends and meet new people but I left halfway through my sophomore year … I kind of missed out on playing sports or being in clubs,” she says.
Her teachers and friends visited Price at the hospital as she recovered from surgery and helped her catch up on homework so she could graduate high school on time.
They threw a birthday party for Price at the hospital.
“I’m really lucky to have them and not just be alone all the time in the hospital,” she says.
Despite having a serious medical condition, Price remains remarkably upbeat and is determined to educate others on heart health by sharing her own story.
“People always ask me, ‘Oh, isn’t it hard to miss so much and have to go to the doctor every week?’” she says. “But for me, I get to meet new doctors and nurses, serve on hospital boards and advocate for families that don’t understand the processes.”
Now a freshman in college, Price is studying communications at St. Petersburg College and dreams of working for the American Heart Association.
She’s already one step closer to that goal: Price is part of the American Heart Association’s 2020 Go Red for Women “Real Women” initiative to raise awareness of heart disease and stroke in women.
“Some of the women are in their 40s and 50s, and I’ve already been through a lot more, medically, than some of them,” she says.
She continues: “It just shows that heart disease can happen to any woman, any man, at any age. People need to take care of their health! Go to the doctor, just get your heart checked. It takes an hour and helps save your future.”
Price’s schedule still revolves around regular doctor’s appointments and a strict regimen of pain and anti-rejection medication, but it is also filled with the hobbies you’d expect of any bubbly college student: laying out on the beach, cooking meals with friends, shopping.
Still, daunting challenges lay ahead: the medication Price needs to take for her heart has exhausted her kidneys.
Doctors told her a few weeks ago that she would need a kidney transplant, but the surgery has been delayed until her white blood cell count is higher to prevent infection during the procedure.
It’s nerve wracking, but Price isn’t dwelling on the “what if’s.”
“Life is so precious, you just take every moment that you get and keep going even when there’s bumps in the road,” she says.