Kaylee Smith, an Epic Heart Hero, shares her story:
I was 14 years old when my primary care physician first detected a weak heart murmur and ordered a heart echo. I was diagnosed with an atrial septal defect (ASD). It was small and my heart murmur was barely noticeable. The doctors decided to monitor the situation rather than perform surgery. At 18, it was recommended I have the defect repaired, partially, because I had developed breathing issues especially while running. However, when they actually went in to complete the repair, the doctors realized I did not have an ASD but instead had a patent foramen ovale (PFO). PFOs are present in about 25% of the population but most never discover the issue because there are no symptoms. I was discharged and told I did not need to follow up with a cardiologist because my heart murmur was extremely faint and not problematic.
I started running in high school and was a member of the cross country/ track team for a year in college. After my first year as an undergraduate, I decided to switch to casual racing and eventually chose to train for and run a marathon. Upon completing my degree, I moved to Ann Arbor to attend graduate school at the University of Michigan. My first year in Ann Arbor, I developed a sinus infection and the doctor was alarmed at how loud my heart murmur was, so he referred me to a cardiologist.
By the time I went to that first cardiology appointment, my heart murmur was quiet again but noticeable, a significant difference compared to my diagnosis at 18. After a variety of tests, I was diagnosed with partial anomalous pulmonary venous return (PAPVR). This means that some of the veins return blood from the lungs to the right atrium instead of the left atrium. Basically, my heart was recirculating a portion of my blood instead of sending it out to the body, causing my heart to slowly enlarge. When I was first misdiagnosed at 14 and again at 18 when they determined I had a PFO, the technology needed for an accurate diagnosis did not exist. In the six years between diagnoses, the imaging techniques had improved enough that they could visualize the arrangement of my pulmonary veins through my chest wall.
After diagnosis, I was scheduled to have open heart surgery to repair the anomalous return. I went to the pre-op appointment and was put on pre-surgery antibiotics. Then, two days later my surgery was cancelled because my surgeon broke her arm. I was devastated. This had been an emotional rollercoaster and I was ready to have a mended heart. With my scheduled surgeon unable to operate, a pediatric radiologist examined my MRI images and realized they might be able to reroute the blood through another vein using a stent in a procedure that had not previously been attempted. This meant that I might not need open heart surgery. Miraculously, the stent worked, and I am able to live a normal life.
Since that surgery, I have continued running and taken up rock climbing. I am extremely thankful to University of Michigan’s Cardiology unit, specifically their Congenital Heart Unit as well as the scientists who improved the imaging technology so I could be properly diagnosed. I am grateful and highly impressed by the willingness of the adult and pediatric cardiologists to work together in the best interest of their patients.
I also do not know what I would have done without my mother. She has been there through every turn and came to support me through all of the major appointments, including a trip from Arkansas to Michigan for the heart surgery that was cancelled.