Written by Kiersten Rock-Torcivia

“Mental health isn’t static; just like anything in life, there are highs and lows.”

Mental Health. It’s a hot topic these days, on the tip of everyone’s tongue. But what does
it look like when it comes to having survived a sudden cardiac arrest at 14, being forced to give
up your lifelong dream of competitive synchronized figure skating, and being saddled with a
heart disease diagnosis made up of 4 words you can’t even spell, let alone understand. My name
is Kiersten; I survived my SCA nearly 5 years ago and have been living with an ARVC diagnosis
for about 4 years now. I use my nonprofit, Heartfelt Harmonies, as a platform to donate AEDs
and advocate for the patient experience, specifically that of ARVC patients.

So, what does my mental health look like? Well, it’s not an easy question to answer, so I
want to start with the beginning. My first symptoms came at figure skating practice two days
before Christmas in 2019. I was originally diagnosed with ventricular tachycardia, asked to limit
activity levels, and given a surgery date for an ablation. After recovering from this, I would be
allowed to make a full return to figure skating and continue living my life like a typical teenager
would. I was relieved that something so drastic had such a quick and easy fix, but I was also
terrified of surgery. In the days between diagnosis and surgery, the impending trip to the OR was
all I could think about; my anxiety was at an all-time high. I had been seeing a therapist for my
social anxiety starting about a year before any of my ARVC symptoms showed up. My therapist
was extremely important during this time as I was able to talk about all these concerns and learn
grounding strategies to help me. Relying on friends during this time was difficult since no
14-year-old would know how to discuss such a complex and far-removed topic.

When the surgery date arrived, I was a mess. I cried a lot. And I mean a lot. On the way
to the hospital, waiting in the pre-op bed, and even on the way to the OR. I was absolutely
terrified and nothing anyone did or said could help. In recovery, I was told that the surgery didn’t
work and that the medical team discovered the diagnosis was more complex. In fact I had gone
into cardiac arrest while on the operating table. I was devastated because what I had believed
would be a quick and easy return to figure skating had slipped through my fingers. The
possibility that I would never skate competitively again was starting to become a reality. I could
not comprehend my life without it.

“Finding out at 14, that your heart is failing you, feels like your world is crashing down. I was faced with fear, uncertainty, and questions no teenager should have to ask.”

Shortly after this COVID-19 turned my abnormal teenage experience into more chaos. I
was completely isolated from friends and extended family. While COVID became the center of
everyone’s existence, my thoughts just swam around my heart and my future. My family had no
clue what my risk was if I got COVID since I was dealing with an undiagnosed condition. We
were so careful, it consumed us all and it was lonely and terrifying. My anxiety was high as I
was really scared that I would experience another cardiac arrest — any type of exertion, any
elevated heart rate, and I was instantly worried. Being so alone also took a severe toll on my
mental health; I began to slip into a depression. I also developed symptoms of OCD as I
developed unhealthy obsessions and compulsions over keeping my heart rate low. On top of all
of this, I was diagnosed with PTSD. Finding out at 14, that your heart is failing you, feels like
your world is crashing down. I was faced with fear, uncertainty, and questions no teenager should
have to ask.

I navigated these mental health issues while I got my finalized diagnosis of ARVC and
had two more heart surgeries, including an ICD implant. Getting my implant was difficult since
it felt like a clear signal that I was different from everyone else. I returned to high school and
experienced all the classic girl drama that goes along with being in high school too. I dealt with
losing figure skating, which was not only my outlet to deal with stress but also a significant
source of friendship for me. It was a really dark point in my life. I continued working with my
therapist, trying to get a handle on all of the different mental health struggles I was going
through. I tried to return to exercising regularly, but it made me severely anxious. My heart
condition requires me to restrict my activities as my arrhythmias are triggered by adrenaline.
What if my ICD shocked me? What if it didn’t? I used strategies like tapping, journaling,
listening to music, talking with my family, and more to try and help myself manage everything
happening inside my head.

“I am now proud of the scar that sits on my chest, a clear display of my strength.”

After careful consideration, and with the guidance of both my therapist and doctor, I
made the decision to begin treatment with antidepressants, recognizing it as an important step in
improving my quality of life. In conjunction with regular therapy, I finally started to see a
difference. It took a lot of time for me to get to the point where I felt medication was the right
choice, but I was dealing with a lot and I felt like I had exhausted my options. Going into my
senior year of high school, I finally started to feel more like myself. I recovered from my OCD
and PTSD as time went on and I started feeling safer in my own body, most of which I have
therapy to thank for. I began to feel grateful for the protection of my ICD and proud of the scar
that sits on my chest, a clear display of my strength.

During my first year in college, I fully returned to exercise, finally feeling ready to trust
my body after working with the Boston Children’s Hospital Cardiac Fitness Program. After my
first year of college, I stopped taking the medication entirely but have since started it again, now
in my sophomore year. Mental health isn’t static; just like anything in life, there are highs and
lows. I have strengths and challenges. I’m lucky enough to have figured out what works to get
me through the rough periods. Dealing with mental health alongside a life-threatening
cardiological disease has undoubtedly been a struggle for me. On the positive, I have been able
to rely heavily on my family and even connect with other survivors, who have made me see this
is normal. So there you have it, my mental health journey as a SCA survivor and a patient with a
SADS condition.