The Beat Goes On

Learning about the family gene FLNC (Filamin C Truncation Mutations are associated with arrhythmogenic dilated cardiomyopathy and changes in the cell-cell adhesion structure. High risk of life-threatening ventricular arrhythmias) and testing positive for the FLNC gene has given answers to our family heart history.

The doctors recommended my siblings and I, who tested positive, have an ICD (implantable cardioverter-defibrillator) implanted for precautionary reasons. An ICD is a battery-powered device placed under the skin that keeps track of your heart rate. Thin wires connect the ICD to your heart. If an abnormal heart rhythm is detected, the device will deliver an electric shock to restore a normal heartbeat. It's like having an ambulance with you at all times.

At night, we sleep with a Medtronic monitor by our bed that technicians periodically read to check our pacemaker on a regular schedule. For example, my monitor was turned off, and I received notification from the ICD nurse telling me my monitor may be disconnected or unplugged. I worked with them over the phone to get the monitor on again. The pacemaker implanted in our body keeps track of our heart pacing at all times. When going in for an in-person pacemaker check, they can read with a computer how your heart paces at all times. Science is amazing!

My brother and I had our ICDs surgically implanted in June 2019, and my sister had her ICD implanted in May 2019 because she was traveling to China. When we were in the hospital, the nurse said she had worked in the hospital for 30 years and had never seen three young family members have an ICD implanted at the same time.