Can you tell me a little bit about your SADS journey?
I’ve always fainted for no reason, maybe once or twice a year. It was either unprovoked or something simple such as tripping, getting hurt, or even being stung by a bee and I would faint.
Growing up, there were many times I fainted while swimming. My parents would always take me to the doctor after. We always received the same feedback of me being “very sensitive” or just having a strong vasovagal response. When I was in my last year of college, it started happening more frequently. I also started having palpitations and a racing heart while I was just sitting there studying. I ended up in the ER a lot, but by the time I got there, everything looked fine.
During one of the ER visits, a doctor was looking over my history. They asked if I had heard about Long QT Syndrome, as my symptoms were lining up with that. My QTc was prolonged, but just over normal limits. At this point, I’d had lots of heart monitors, but since I’d faint so infrequently – only once or twice a year – my monitors never caught it. I brought up Long QT Syndrome to my doctor, but they figured I would have known if that were it because it would be in your family and someone would have found out by now. They said I could get tested if I’d like, so I pushed for it.
In the meantime, my mom’s cousin, an airline pilot doing his annual physical, was told that his QTc was extremely prolonged, and shortly after tested positive for Long QT Type 5. Unknowingly, I was being tested at around the same time, and my test also came back positive for Long QT Type 5. Because of both of our positive genetic tests, my entire extended family was tested and about half of everyone came back positive. I was put on beta blockers but I still worried about fainting and my heart racing. My apple watch was showing some alarmingly high heart rates too.
My new cardiologist suggested putting in a loop recorder for long term monitoring of my heart, and I agreed. About six months after the loop recorder was placed, I had this overwhelming feeling that something bad was going to happen. That night I had a Cardiac Arrest. In the middle of the night my dog was whining at me, so I woke up and got out of bed to check on him. That’s the last thing I remember until waking up in the hospital. My husband said he heard me making a strange gasping sound, but he couldn’t wake me up and so he got me to the hospital.
He had taken me to a small stand alone emergency room that was only about a block away from our house. We told the doctor there that I had a loop recorder, and they called someone who was able to read my device. They couldn’t believe it but it had recorded about two minutes of asystole. I was now heading in an ambulance to a bigger hospital to get a pacemaker.
I was pregnant at the time. Unfortunately my baby didn’t make it because of my Cardiac Arrest. I miscarried during the five days they kept me in the hospital before I was stable enough to have pacemaker surgery. Once we started figuring out my heart a little better and feeling under control, my husband and I tried for a baby again. We now have two kids, both of whom have inherited the Long QT. They both had genetic testing done right after they were born.
What advice would you give to someone who has been newly diagnosed with a SADS condition?
I would say don’t be afraid of the diagnosis. It’s not exactly good news, but it’s better to know what’s going on so you can do all you can to stay safe. It was a relief for me to know, especially when I knew something was wrong with my heart. I would also tell them to listen to what your doctor is saying, and follow their recommendations. If you had a Cardiac Arrest like I did, it was hard to trust my body for a while. You just take advantage of the fact that your heart is going to work. I was scared to fall asleep for a while. I kept needing reassurance from my doctor that my pacemaker was working and would keep my heart from stopping again.
With my kids, I was bummed that they have it, but also so glad we know because then we keep them as safe as possible.
How has the SADS Foundation been helpful towards you and your family?
When the first ER doctor mentioned Long QT Syndrome, I started looking into it, because I’d never heard about it. That is how I found SADS and got a lot of information and saw there was a community to connect with. Social media is kind of nice, because you can find other people. I have a very small blurb about my Cardiac Arrest on my Instagram, and have people from all over the world messaging me. It’s been nice being able to connect with other people like that.