Patient living with congenital heart defect finds strength and support through community
Jessica Brewer, LMH Health
In 1974 at the young age of 18 months, Amy Karr, Lawrence resident and LMH Health Gift Shop assistant manager, had her very first quadruple bypass heart surgery. This was the beginning of her journey as a congenital heart patient.
Karr’s condition is called Tetralogy of Fallot, a rare heart condition that affects normal blood flow through the heart and appears in less than 20,000 people nationally.
“Tetralogy of Fallot is a congenital heart defect that occurs in utero when the heart doesn’t form correctly,” said Dr. Elizabeth Guastello, a cardiologist with Cardiovascular Specialists of Lawrence. “It’s a constellation of four heart defects that together, inappropriately allow oxygen-deficient blood from the right side of the heart to be shunted over to the left side of the heart. This pumps oxygen-deficient blood to the body causing cyanotic spells (or “tet spells”) in which the baby turns blue from the low oxygen.”
“After my first surgery at 18 months, I went seven and a half years without another surgery or even medications,” said Karr. “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 of her difficulties breathing, but nevertheless, she kept her head up and carried on. 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.”
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On her daughter’s sixth birthday, Karr was transferred to St. Luke’s Hospital in Kansas City where they shocked her heart after it had stopped and fortunately, they were able to start it again. She had a cardiac ablation, which scars or destroys tissue in your heart that triggers or sustains an abnormal heart rhythm, and an implantable cardioverter-defibrillator implanted, a battery-powered device placed under the skin that keeps track of your heart rate. It was during that same hospital stay that 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.”
She said through the ups and downs of her journey that she never lost hope. She has seen the incredible advancements in healthcare and how they 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 shared that she and her colleagues at Cardiovascular Specialists of Lawrence provide ongoing care to adult patients that 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,” said Guastello. “Providing this care close to home supports the patient and their family best to maintain a strong and healthy heart and their overall wellbeing.”
She said one thing that has continued to help her is the community and wonderful support system that has grown with her. Sometimes seeking help can be scary or intimidating, but Karr confirmed that there are resources locally here in Lawrence that await your presence, even in the midst 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 named themselves “the LMH Health Heartbeats.” She said anyone is welcome to join at any time. They love new attendees and right now with COVID-19 they’re holding their monthly meetings on Zoom.
“You can contact LMH Health Cardiac Rehabilitation for details or visit their website at www.lmh.org to learn more,” Karr said. “I also enjoyed attending the Cardiac Rehab Wellness Program at LMH Health. This program has paused due to the virus, but once it is back up and running I encourage everyone with a heart condition to check it out. They keep me accountable to exercise and diet and I feel secure checking in with the nurses and staff who know my condition.”
Cardiac Rehabilitation not only helps you bounce back, but they continue to care for you throughout your entire journey. Leann Dickson, a nurse in Cardiac Rehabilitation, said “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 is happy to say that she is loving life. Of course, she said there are tough days, unmotivated days and days that just aren’t as fun, but she lives a normal day-to-day life working, enjoying 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 your life may look different, but that is the beauty of support groups and rehab. Because of those resources, you never have to walk alone. Empower yourself and empower your health.
“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 shared that she will never forget going into her third open-heart surgery. She was being prepped to head into surgery and in the hustle and bustle of her pre-op nurses, she began to feel overwhelmed and scared for her surgery.
“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 for LMH Health.