Can you tell me a little bit about your SADS journey?
In the spring of 2000, I went into sudden cardiac arrest. After about four weeks of testing, they finally realized I had Long QT Syndrome. I went for six months without a device. My mom really advocated for me, and she thought that I should get an ICD. We talked to a specialist who had just started in town. I got my first implant right at the beginning of 2001. It was a pacemaker and defibrillator.
Before I knew about this heart condition, I was an athlete, and I loved to play sports, and I loved to work out. It was my space where I found my mental clarity. So when this happened, and I suddenly had to stop playing sports, and was advised by my doctor not to work out like I used to, it was really tough for me. I gave up sports, but working out wasn’t something I could see myself giving up.
I’ve had to learn to trust my device and that it works. And trust knowing myself, and where my boundaries are. For me, it’s been a practice in self-care – doing what I know what’s mentally right for me, which is moving my body, but also respecting my limits and my device. If that’s what makes you happy in life, you can find a way to keep it.
How have the recoveries been from your ICD surgeries?
My first surgery – because it’s a bigger surgery, since they put in the leads – was a bit more intense in terms of recovery. I remember I couldn’t move my arm for a while after. Once I got mobility back, I felt like it was just getting used to having that bump. Now I’m used to how it feels when I work out. Now, the recovery after each surgery has been pretty minimal because the pocket is already there. I feel like I get my mobility back within a week.
It is more difficult for me to build strength in my chest muscles, so I have to be careful about what kinds of exercises I do, especially a few months after a surgery, but other than that I forget that it’s there sometimes.
How has your ICD impacted your life?
It’s impacted it in a positive way. I’m someone who loves to work out – that’s part of my lifestyle and career. The ICD has given me peace of mind. If I didn’t have it, I would be afraid to get my heart rate up and work out. That, for me, outweighs any sort of inconvenience – for me, those are nothing in comparison to being able to actually live my life.
And I was skeptical at first. I was going into college when I first got it. And I was supposed to be an athlete and had to stop playing, because we were so unsure about everything. I had a negative feeling about it at first, but had to learn to accept it. Now I’m thankful that it’s there.
What encouragement or advice would you give someone who’s receiving their first ICD?
See it as a positive – as a safety net or a new lease on life. Don’t worry about the things that could hold you back. In my experience, it’s never gotten in the way, never been something that I was afraid of. Having a good mental space around it, being positive, and seeing it as something that’s helping you rather than a foreign object is a better perspective. It’s your crazy little friend.
How has the SADS Foundation been helpful to you?
When I was 18 and was suddenly this distraught college student with a pacemaker, my mom was trying to find resources for us. Even though I didn’t know at the time, she knew that I would need a community – that it would be helpful. It’s been a good outlet to see other families advocate for themselves – she really had to advocate for me. And SADS was a huge encouragement to do that. It’s been a great community for my family in general.