My Heart Journey: From Diagnosis to Heart Failure

At the age of 52, I was told that it was highly likely I would need a heart transplant. Having lived with heart disease for many years, this news was a surprise, disappointment, and shock.

My heart journey began in 2006, when I was 38 and diagnosed with myocarditis, a heart virus. At the time, I was a mother to a two-year-old and a three-year-old, and I was also working. I had been attributing my fatigue to the normal demands of motherhood. During a visit to my parents in South Dakota, I experienced a sharp pain in my heart that lasted only a few seconds. My mother insisted I go to the hospital. I was transported by ambulance to the Avera Heart Hospital in Sioux Falls, two hours away. Being from Saint Paul, I requested a referral to a cardiologist in Minnesota, where I was ultimately diagnosed with myocarditis. And so my journey began.

This journey began when I was 38 years old. I want to share my story for several reasons. Heart disease is the number one killer of women, and regular heart screenings and genetic testing are crucial for saving or prolonging one’s health. Being proactive about heart health can significantly impact quality of life.

After my diagnosis in 2006, I became a heart patient living with cardiomyopathy. Initially, accepting this reality was challenging, especially given my young age and the presence of young children. In 2007, my son was born, adding to my roles as a wife, mother of three, and heart patient. I remember telling my doctor that I would be back to normal “in no time.” Unfortunately, my condition did not improve; in fact, it worsened over time. However, I have been fortunate to receive care from some of the top heart doctors in the country.

My story took another turn in 2018, when my brother underwent an MRI on his heart. Given our family history—our maternal grandfather died suddenly around age 50 and my mother is an LVAD (Left Ventricular Assist Device) patient—the potential for hereditary heart problems was high. My brother’s genetic testing revealed a heart gene mutation, FLNC (Filamin C Truncation Mutation). My siblings and I were all tested; three of the five of us have this mutation. In June 2019, those of us who tested positive received an ICD (implantable cardioverter defibrillator), a pacemaker/defibrillator surgically placed near our hearts.

On August 3, 2020, I followed my usual morning routine: a run, breakfast, and a shower. Shortly after stepping out of the shower, I passed out and woke up on the bathroom floor, my face covered in blood from a two-inch cut caused by the fall. My husband took me to the hospital, where I spent the next three days. Testing revealed that my heart was beating at 300 beats per minute, causing me to faint and triggering my defibrillator twice. The defibrillator saved my life. During my hospital stay, I learned that I would likely be a candidate for a heart transplant.

“That’s life.”