In 1974, 18-month-old Amy Karr had her first quadruple bypass heart surgery.

This was just the first step of the journey for Karr, who is now the assistant manager of the LMH Health gift shop.

Karr’s condition is called tetralogy of Fallot. It’s a rare heart condition that affects normal blood flow through the heart and appears in less than 20,000 people in the U.S.

“Tetralogy of Fallot is a congenital heart defect that occurs in utero when the heart doesn’t form correctly,” said Dr. Elizabeth Guastello, cardiologist with Cardiovascular Specialists of Lawrence.

Guastello said the defect is actually a constellation of four heart defects. Together, they allow oxygen-deficient blood to be shunted from the right side of the heart to the left side, which allows that oxygen-deficient blood to be pumped out through the body. This causes cyanotic spells, where a baby will turn blue from lack of oxygen.

“After my first surgery at 18 months, I went 7 1/2 years without another surgery or even medications,” Karr said. “However, eventually my doctors knew I had to repair my pulmonary valve since I had grown and it was tearing.”

Karr remembers not being able to play sports because she had difficulty breathing. Nevertheless, she kept her head up. After her second procedure, she remained healthy and symptom-free until just before her 40th birthday.

“I had atrial fibrillation — you might know this term because it is what roughly every fourth commercial on TV is about now,” she said. “I can remember going to the emergency department at LMH Health and my heart would race. They determined the cause of this was the scar tissue buildup from my previous surgeries.”

On her daughter’s sixth birthday, Karr’s heart stopped. At St. Luke’s Hospital in Kansas City, medical personnel shocked her heart and were able to start it again. Karr had a cardiac ablation, which scars or destroys tissue in the heart and triggers or sustains an abnormal heart rhythm. She had an cardioverter-defibrillator implanted — it’s a battery-powered device placed under the skin that keeps track of her heart rate.

During that same hospital stay, her cardiologist said her valve needed to be replaced.

“I have had four heart ablation procedures, and I sincerely hope and pray that is it,” Karr said. “I have now been healthy and stayed in sinus rhythm for over four years, and this spring will mark six years since my last open-heart surgery.”

Karr said that through the ups and downs of her journey, she never lost hope. She has seen the incredible advancements in health care and how treatments continue to evolve year after year and save lives.

“After you have a heart health challenge, no matter what it is, you can overcome it,” Karr said. “It might be easier said than done, but do not let it define you. There are changes you may have to make to your daily life, but you can go on to live a happy and healthy life. I am living proof of that.”

Guastello said she and her colleagues at Cardiovascular Specialists of Lawrence provide ongoing care to adult patients who experience congenital heart defects as children.

“We partner with our patients to provide routine echocardiograms, electrocardiograms and other ongoing evaluation services to help these patients as they continue to live and thrive through their heart defect,” Guastello said. “Providing this care close to home supports the patient and their family to best maintain a strong and healthy heart and their overall wellbeing.”

Karr said one thing that has continued to help her is the community and her support system. Sometimes seeking help can be intimidating, but Karr said there are resources here in Lawrence, even in the middle of a pandemic.

“There are times when you may need strength, encouragement and community, and it’s important to find that,” she said. “There are options for you. I encourage you to talk to friends, therapists, and places where you worship. LMH Health has a wonderful cardiac support group, as well.”

Karr said those who attend the LMH Health Cardiac Support Group have dubbed themselves the “LMH Health Heartbeats.” She said anyone is welcome to join the group at any time; it holds monthly meetings on Zoom, and if you’re interested you can contact LMH Health’s cardiac rehabilitation staff to learn more.

Karr said she also enjoyed LMH’s Cardiac Rehab Wellness Program, which helps heart patients with physical activity and nutrition. It’s currently paused because of the COVID-19 pandemic.

“They keep me accountable to exercise and diet, and I feel secure checking in with the nurses and staff who know my condition,” Karr said.

Leann Dickson, a nurse in the cardiac rehabilitation program, said that “we not only focus on getting our patients healthy after an event, but we look at prevention, awareness of risk factors and overall heart health.”

Today, Karr says she loves her life. Of course, she said there are tough days, but she lives a normal life: working, spending time with her teenage daughter and — when concerts can happen again — going to watch live music.

“It is so important to be patient with yourself, and if you have a family member who has had a heart event, be patient with them,” she said. “Heart episodes will not heal overnight. It is exhausting, mentally and physically, and it is OK to be upset and confused. I have been there, and I empathize. If you try to remain positive and lean on others, you can come to peace with what is happening, and that is groovy.”

Karr said life may look different after a heart health crisis, but that support groups and rehab can help.

“I am grateful for many things today,” she said. “I am grateful to have had my daughter that the doctors thought I’d never be able to have. I am grateful for my story and for how I can use it to encourage and spread light to others. One day, I even hope to write a children’s book about it to encourage little ones and their families.”

Karr said she would never forget going into her third open heart surgery. In the hustle and bustle of her pre-op nurses, she began to feel overwhelmed and scared.

“It felt like organized chaos, and I began to freak out,” Karr said. “Now I love live music, and they had some wonderful classic rock playing at the hospital. I began to focus not on what was going on around me, but on the music to calm me down. As they were rolling me into the operating room, Bob Marley’s song ‘One Love’ came on. As I am listening to the lyrics saying ‘one love, one heart,’ I just began crying. My nurse assured me everything was going to be alright and I told her I know, because in that moment, I had just had my sign that I was going to be just fine.”

• Jessica Brewer is the social media and digital communications specialist at LMH Health, which is a major sponsor of the Lawrence Journal-World’s health section.