Can you tell me about your SADS journey- from diagnosis to where you are now?
I’m originally from Guam. Moved to the states with my mom & dad when I was 8 years old. When I was six years old, my mom and I were on our way to a fiesta party. I was in the backseat and before I fell asleep I remember thinking – mom will wake me when we get there. I ended up waking up to the bottom of a sidewalk street lamp. It turns out that I actually ended up going into cardiac arrest while I was sleeping.
Luckily enough, two weeks before this, my mom learned CPR. So she was the one that revived me. At the moment of revival I was pulled out of the car and placed on the sidewalk and awoke to the street lamp. She revived me long enough to bring me to the local fire station where they put oxygen on me and from there the fire station took me to the hospital. I again lost consciousness and woke up in the hospital moments later.
At seven I had to go to California for the Ronald McDonald House where they funded a lot of my surgery. I got my pacemaker installed in Los Angeles. At sixteen I had my ICD installed.
How have your recoveries been with your ICD surgeries and what advice would you give?
After about a month, month and a half, I’m back to my normal activities. My ICD has allowed me more freedom than I’ve ever thought I could have.
What advice would you give to someone who’s just been diagnosed with Long QT?
For a lot of my life, especially in my youth, I always had a victim-like mentality. Like, why me? I’m just a kid. And in my teenage years, I’d ask myself that same thing. Why me?
For someone who’s newly diagnosed, I would just say, it’s not the end of the world. It’s definitely going to be something that you do have to figure out how to cope with. This is not the end of the road. It’s a fork in the road. You have to find a positive way to cope and navigate yourself in a more positive direction. Don’t let this condition make you feel like you can’t live a normal life. Obviously, there’s things you have to stay away from. But at the end of the day, you can still have the life that you’ve always wanted. Personally, I feel like I have the life I’ve always wanted, and I never thought I’d make it this far.
How has the SADS Foundation been helpful to you?
The SADS Foundation has been helpful to me, because of the patient stories that I’ve read. They give me hope. Even though I have a positive outlook, I’m not immune to the anxiety that I get every now and then.
SADS has helped me be able to relate to so many others that I couldn’t really relate to before. It’s also allowed me to feel like I have a voice or that I’m seen. That’s how SADS has really helped me.
Is there anything you want others to know about sudden cardiac arrest?
It can happen at any point in time. I live with the unknown every day, so it can happen. But I do tend to think having the peace of knowing that I am myself every day allows me to override that anxiety.
Also keep your head up just because you’re dealt these cards doesn’t mean you have the worst hand you’ve got to wait for them to play out.