Can you tell me a little bit about your SADS journey?
I have Brugada syndrome that was identified when I had Cardiac Arrest at home, then somehow came out of it. A few years before that I had passed out while wearing a Holter monitor.
At first I thought I’d had a heart attack and they said it was not. Many people can’t distinguish between Cardiac Arrest and a heart attack. I lived in fear thinking that something like that might happen. I had no idea what Brugada syndrome even was.
My mom’s father died unexpectedly just two months before I was born, when he was 52. Nobody ever knew why. When it happened to me it basically unlocked the answer to a family mystery because then I did genetic testing. That allowed basically all my family members from that side to get tested, including my two children who tested positive.
A couple months later I fell in the shower. 911 was called. I could feel my heart in the irregular rhythm again. By the time the EMTs got there, I basically felt fine. We actually discussed not going to the hospital, and finding a reason why I had passed out. I was sick at the time, running a fever and was on Z-Pak.
One of the EMTs diagnosed it because he just had a class about it. “He has Brugada syndrome.” I didn’t know what that was. He told me I needed to go to the hospital. I wasn’t sure if I wanted to go but he did not give me a choice other than what hospital.
I was septic, and had to have my ICD taken out and another one put back in. I had to wear a wound vac, a life vest and PICC line for a couple months. I continued living my life, I couldn’t drive so my dad who was retired drove me around. It was a difficult time.
I handled it in a manner that was overly optimistic, basically, to the point of lying to myself. When this happened I looked at it as a blessing in disguise. There’s a huge difference between knowing something and believing it in your heart. It took time to finally have it sink that I could have a normal life.
What advice would you give to someone who’s just been diagnosed with Brugada?
Anytime you face a challenge, you have a choice to whether or not to let that become a part of you, or to let that define you. A person should be defined by many different things, not by one thing.
But you can’t ignore it. Sometimes people go either direction. They focus way too much on it. Or they pretend like it’s not important. Take time to fully understand, believe it and internalize it. Then hopefully it can help you be stronger.