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Maria Legatt, 33, has reason now to celebrate not one but two birthdays—the actual day she was born and the day she was given a second chance at life – Aug. 4, 2011—her “re-birth” birthday when she had a heart transplant at the University of Minnesota.
There are more than 110,000 people in this country in need of available organs, many of whom will not survive the wait. She knows she was lucky. “If my story can help just one person, it’s worth what I’ve had to endure.”
Maria’s heart story began at the young age of 8, when she couldn’t shake a nagging cough and sense of fatigue. Her mom made an appointment with their family doctor, who listened to her heart, knew it didn’t sound quite right, and referred her to a pediatric cardiologist. It was after a routine cardiac ultrasound, when Maria was only in second grade, that she was diagnosed with two words that would change her life—Hypertrophic Cardiomyopathy—a defect restricting blood flow to the heart.
According to the American Heart Association, HCM is the second most common form of heart muscle disease, is usually genetically transmitted. HCM affects up to 500,000 people in the United States and occurs at a rate of five per 1 million children. “Hypertrophic” refers to an abnormal growth of muscle fibers in the heart. In HCM, the thick heart muscle is stiff, making it difficult for the heart to relax and for blood to fill the heart chambers. While the heart squeezes normally, the limited filling prevents the heart from pumping enough blood, especially during exercise.Patients may have shortness of breath, exercise intolerance, chest pressure or pain, fainting, or no symptoms at all. In rare cases, HCM can cause sudden cardiac death. And Maria has an especially rare form of HCM.
“After I was diagnosed, my heart doctors monitored me with tests and clinic visits every six months,” Maria explains.
Aside from the regular checkups and a few endurance limitations, she was able to live as “normally” as possible, attending school, competing in gymnastics, softball, and golf, and spending time with family and friends.
When Maria was in her mid-20s, she started experiencing unusual symptoms: abdominal discomfort, digestive pain, backaches, heart palpitations, shortness of breath, and a general feeling of something “not being right.” Her specialists didn’t know what was wrong, but she listened to her body, trusted her intuition, and kept searching for answers.
One of her specialists recommended laparoscopic surgery, “basically a quick surgery to check out the body’s organs” Maria explains. Before the surgery, she had a pre-operative electrocardiogram (ECG). The anesthetist noticed alarming abnormalities, concerning enough that he promptly cancelled the surgery and sent Maria straight to a cardiologist.
At the young age of 27, she received the earth-shattering news that she was in congestive heart failure (CHF). She was dumb-founded. Congestive heart failure? At 27?
She was prescribed a host of medications and given strict orders to follow a low-sodium diet. It was when she was living with CHF that Maria says “life changed drastically for me.” Sports were out of the question; she didn’t have the energy. Over the next five years, her body grew weaker and weaker. She eventually had to quit her job and have a pacemaker implanted to regulate her heartbeat. At one point, she was hooked up to IVs. It terrified her to think that her time was running out.
When Maria turned 33, her cardiologist recommended a heart transplant evaluation. She knew that she wouldn’t get better without a transplant, but worried that she might not survive the surgery. She had a lot to think about. It was at this time in her life that she met Keilee-Rae Miller. Maria was at a Go Red For Women Ambassador meeting when in walked Keilee, just 12 days post-transplant, wearing a face mask to shield her from potentially harmful germs. The two women talked briefly that afternoon, but Maria didn’t want to trouble Keilee with her own heart issues when it was obvious that Keilee was still fighting her own battle. (“Plus she was kind of intimidating!” Maria laughs.)
They crossed paths again a few months later at the “Hearts for Fashion Show” at the Mall of America and “we clicked,” Maria says. “I had so many questions for her. We just sat there and chatted like we had known each other forever. We had so much in common, we couldn’t quit talking!”
“We have the same interests and the same storyline,” Keilee adds. “We swore we were separated at birth!”
Today they are best friends—“heart sisters for life”—not only because of who they are but also because of what they’ve gone through. “We know what it feels like to be knocking on death’s door,” Keilee explains. “We know what it’s like to experience a second chance at life.”
They also know that the strength of the human spirit gets people through the hard times—and often this strength comes from leaning on others for help and support—which is why they are piloting Heart Match Twin Cities Ladies, an online support network for AHA, so that other women with heart disease won’t feel scared or alone.
Maria is eager to take Heart Match to the next level, but for now will focus her energy on recovering. She gets stronger every day, thanks to the love and support of her husband Dane (“he is my rock,” she says), her family, her friends, her fur babies (her dog Lizzy and cat Momo), a sense of humor, and taking it one day at a time. She admits that after having lived with a heart defect for so long, it’s hard to grasp the fact that the cloud has lifted and she’s now on the other side, ready to live a “normal” life again.
After all that she’s endured, she does not take her heart or her health for granted. She was given the greatest gift of all — a second chance at life — and she doesn’t for a second forget the sacrifice that somebody made for her.
“If it was not for my donor—whoever that person was—I would not be here today. My donor lives on through me. I make sure that I treat my new heart and renewed body with the respect that it deserves.”
Shouldn’t we all?
To volunteer with the Twin Cities Go Red Ambassadors or join Heart Match Twin Cities Ladies heart survivor support network, contact Barbara.firstname.lastname@example.org