Can you tell me a little bit about your SADS journey – from diagnosis to where you are today?

I was diagnosed with Long QT Syndrome Type 1 when I was 22 years old. I was born with LQTS but wasn’t aware of it, nor was my family. The reason we discovered my LQTS was because I survived a Sudden Cardiac Arrest in 2012 while I was rock climbing.

Before my SCA, my only symptom was fainting several times throughout my teenage years and early 20s, and we didn’t know why. My parents and I went to the ER, had several hospital visits and doctors thought I might have had epilepsy, but all the scans and tests came back normal. We always left the hospital being told that everything looked fine, and with no answers.

I moved to San Francisco two days before my SCA. On the day of my event, my brother and I were planning to go for a run on Ocean Beach but at the last minute decided to go to the climbing gym instead. We were warming up on a bouldering wall – and from my perspective, I started feeling really dizzy and then lost consciousness.

From what I’ve learned later, I fell off the wall, and my brother realized I wasn’t responsive. He yelled for help, and the man who was bouldering next to me happened to have CPR training and immediately started CPR. By chance, a Wilderness First Responder course was being taught in the gym adjacent to where I was, and the (CPR certified) instructor and co-instructor, David and Thea, came over to help with the CPR. David learned that I did not have a pulse, someone had called 9-1-1 and someone else was retrieving an AED. The man who had started CPR continued compressions while David began rescue breathing and Thea put the AED pads on me. They kept doing CPR until the machine evaluated me and said I needed a shock. Thea pressed the shock button and once the shock was delivered, they started doing CPR again. After about 2 or 3 more cycles I finally woke up and took a deep breath. The ambulance came a minute or two later.

I was clinically dead for about three minutes. I feel like one of the luckiest people to have survived a SCA. I know not everyone’s stories are as fortunate as mine. The ambulance took me to the hospital after I was revived and I was there for three weeks, where I was diagnosed with LQTS and had an ICD placed.

What challenges did you face after diagnosis?

The biggest challenge after my diagnosis has been mindset, and learning not to let my heart condition define me. It was a big shock at first, literally and figuratively, and I was scared, but when I zoomed out and looked at the whole picture, I became really grateful for having survived my SCA and for the perspective it brought me. Nobody can tell the future, regardless of whether we have a heart condition or not. Tomorrow is never promised for any of us so we all have that in common and can only benefit from making the most of the present. People with SADS conditions are more aware of the risks in life, but we’re all living with that same reality.

How has your ICD impacted your life?

For the most part, my ICD has made me feel safer. I joke with my friends and family that my ICD is like having an extra life in Super Mario Bros. 3 (my favorite Nintendo game). It’s there just in case.

The biggest challenge I’ve faced with my ICD is the acceptance of having a foreign object in my body, living with the discomfort that comes with that sometimes, and little things I’ve learned to live with that aren’t always comfortable or easy – like the feeling while exercising and not being able to sleep on one side. With an upcoming ICD replacement surgery, my ICD placement/appearance may change from what I’m used to. My current struggle with that is the fear of how it will look physically on my body, and how it may be a lot more noticeable. Something I’m working on.

What advice would you give to someone who was newly diagnosed with a SADS condition?

As scary as it is, don’t let this condition define you. It’s a part of your story – not all of who you are. Getting diagnosed with a SADS condition isn’t great, but it’s a lot better than not knowing.

I wouldn’t be alive today if those around me hadn’t been trained in CPR; my doctors told me I had a less than 5% chance of survival. Going to a CPR certification class might seem like just another thing on your to-do list, something you might not use or something you would only go to if it’s required, but none of the people in that gym thought they would use their CPR training to save my life. And because of that training, I’m alive today.

If you suspect that you or your child may have a SADS condition, we’re here to help. Reach out to us for more information.