Fighting Cardiomyopathy as a Family
In August 2011, I was anxious, nervous, thrilled, worried and relieved all at the same time while walking into Cincinnati Children’s Heart Institute. Since the fall of 2008, I felt a strong need to know what my three children’s hearts looked like. I was diagnosed with cardiomyopathy at 30 years old. I had been dealing with heart issues – SVT, AV nodal reentry tachycardia, heart valve leaks and palpitations, since 25 years old. My father and grandfather both had early onset heart disease … genetics was definitely not on our side. I had to know if I should be worried about their hearts. I called Cincinnati Children’s Heart Institute in the spring of 2011 and talked to a scheduler. I explained to her my concern for my two daughters and son. She was so kind, and she said, “I can help you.” I remember lots of tears. I called my husband, my best friend, my parents and my sister. I was so happy that I was finally going to have some peace of mind. I told myself, “You’ve done the right thing here, being proactive.” Hopefully, their hearts would be perfect with no problems. If, however, something was wrong, we would know it now. We would have caught if before anything bad could happen. I have learned a lot about cardiomyopathy since my diagnoses. I know the only real way to see it is to have an echocardiogram. We scheduled the appointments for all three children on the same day. They each had EKGs and then met with our team of doctors. The kids thought seeing their own hearts on a monitor was really cool! They were told in great detail what the technicians were looking at. The kids received quite a lesson that day on the most important muscle in their body.
A few minutes later, in came a heart failure specialist, a cardiologist, a cardiomyopathy genetic specialist and a genetic counselor, among others. So many doctors could make someone a little nervous, but not at Children’s. They sat around our room like they were sitting in my living room. It was easy to talk to them, not like other doctors. They wanted to hear how I was diagnosed, when my heart issues started. They talked quietly with the kids while I gave them my history. They listened to each of their hearts and had the kids telling stories about their summer. The doctors said upon first glance the echocardiograms looked OK, but they were going to be taking a closer look after hearing how I was diagnosed. They also wanted to DNA test my blood. I was relieved the kids looked OK, but I was also a little shocked, to be completely honest. I wanted to hear they were each perfect, but I know too much about the genetics. It is very hard to escape. So, when I received an email the following day from the heart failure specialist I wasn’t shocked.
The girls, 9-years-old and 4-years-old, were fine. Their hearts looked very strong. The doctors wanted to see them in one year. Our 8-year-old son wasn’t quite the same. It wasn’t terrible; we caught it very early. My son, Tony, has left ventricular non-compaction cardiomyopathy. He doesn’t need any medication at this time; he has no restrictions. He can continue living just like he has been. They want to see him back in 6 months. We briefly discussed me becoming a patient at the adult clinic through the Heart Institute. We felt this would be a valuable tool for my kids, the Heart Institute, me and especially our son. The things the Heart Institute could learn from seeing a mother and son with cardiomyopathy were especially interesting to the staff. It was an easy decision to make; I made an appointment for Tony and myself in February 2012. This would be the first time they looked at my echocardiogram. Meeting again with the same team of doctors, Tony’s eco was unchanged, which is exactly what we want. My eco had surprisingly gotten better for the first time in 3 years. The doctors were very happy. I was ecstatic.
We discussed our future. We all agreed it would be best if we were both seen at the Heart Institute. They would be able to take care of my pacemaker. I should have had a heart failure specialist since being diagnosed with cardiomyopathy, but I had not until now. The doctors sat in our room and listened to my questions about Tony playing sports and what to expect and look for. They wanted to know what I had been doing to stay healthy and how I thought I was able to rebound my EF% (the measurement of the heart’s efficiency to pump blood). I told the doctors eating right, drinking a ton of water, taking my medication and running. They told me to keep doing everything I was doing. The team of doctors saw us as a family full of life living with heart disease. We are all living with it, even though only two out of the five of us have the disease. I feel very safe and so comfortable in their hands. They know us not as just patients at the hospital, but as the Calla family – Gracie, Tony, Callie Jo, Mom Terri and Dad Corey. I ask myself how we got so lucky, to be looked after and taken care of by Cincinnati Children’s Heart Institute. I know the answer … hope. Hope for a long, bright future. Where we can see and even be a part of the advancements in technology, knowledge and awareness of heart disease. We are fighting this disease as a family with the Cincinnati Children’s Hospital Medical Center Heart Institute right beside us.
Meet the family behind the fight. See how Terri’s proactive approach with her history of cardiomyopathy and the expertise of Cincinnati Children’s Heart Institute are changing the lives of her children.