From Sudden Cardiac Arrest to Saving Lives: My Journey with ARVC and Heartfelt Harmonies
Diseases
Chronic Pain, Heart Disease, Rare Disease
Issues and Challenges
Kiersten has encountered: Rare / Underserved Disease, Invisible Illness, Medical Devices, Transparency in Health Care
My Story
My name is Kiersten Rock-Torcivia. I suffered a Sudden Cardiac Arrest (SCA) on the operating table just 4 years ago. I was 14, and I had no idea my life was about to change forever. I began a diagnosis process that lasted just over a year. In that time, I have had multiple procedures, surgeries, tests, and medical appointments. I have had 3 heart surgeries, and I'm now 18. I was diagnosed with ARVD/C, a predominantly genetic rare heart disease that can be life-threatening when undiagnosed. I have an internal defibrillator (ICD) to help me if I ever experience another SCA. I had to completely pivot and give up my biggest passion, synchronized figure skating, since exercise can induce SCAs when you have ARVC or a similar disease.
With all this extra free time, I started Heartfelt Harmonies Charity because I know how hard it can be to undergo surgeries and procedures, particularly when young. For my first surgery, I wish that I had known music would help. Heartfelt Harmonies works to ensure that other kids won’t feel as stressed and worried by providing music therapy kits. I hope that Heartfelt Harmonies can help as many children and families as possible during a stressful time. After running Heartfelt Harmonies for a while, I decided that I wanted to make a deeper impact. Before having my ICD implanted, as diagnosing heart disease can be a long and complex journey, my doctors recommended my family purchase an Automatic External Defibrillator (AED). Having gone through this process, I know how expensive and critical these machines are. Heartfelt AEDs aims to help families, clubs, sports teams, and other organizations that have limited funds by donating AED devices. I hope that these devices will never have to be used, but they will be there to save a life if ever needed, maybe yours or someone you love.
The journey to get here has not been easy. ARVC is very under-researched, and being a minor going through extreme medical procedures meant that sometimes doctors decided for me to keep me out of the loop. My parents were often the target of all major discussions while I sat there as if they weren't discussing my life in front of me. I didn't even know I had suffered a SCA until 2 years after the fact when my parents decided to tell me. At 14, having already experienced more in the medical area than a lot of adults do, I had to grow up fast. I felt mature enough to handle these big conversations, but others decided I was not.
My Motivation and Inspiration
Having ARVC and undergoing such a difficult experience to get my diagnosis has definitely inspired me. I'm actually studying at Boston College to become a nurse, looking specifically at pediatric cardiology. I want to help others like me, just like the amazing nurses who helped me. My parents have also been the best support through all of this. They have done hours of research and always did what they thought was best for me. Between fighting for insurance coverage and seeking out specialists up and down the coast, they have really been my rock, and I wouldn't be here without them.
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