Can you tell us a little bit about your SADS journey – from diagnosis to where you are now?
I’ve always played competitive sports my whole life. When I was 14, during a preseason, I had a Sudden Cardiac Arrest. I got to the ER right away and got discharged with dehydration, which I kind of knew wasn’t right but was in a different headspace resulting from the traumatic event I just encountered.
I went to my checkup to make sure I could get the neck brace off, because I didn’t know if I had injured my spine or neck or anything. I had a pretty hard fall. And that’s when a pediatric cardiologist told me he looked over my EKG and something didn’t look right. I don’t really remember everything but he told me that I probably have a condition called Long QT Syndrome. He proceeded to tell me I couldn’t play sports again and that was kind of the end. It was really sad and I remember just crying. It was really bad news.
We were referred to Boston Children’s Hospital, to the specialist Dr. Dominic Abrams. We met with him and he said that I could play sports again, there just had to be a different kind of way to go about that. So I rejoined field hockey and that was a good season.
I’ve been pretty lucky in diagnosis, because it happened right away. I’m also on beta blockers – Nadolol – and that’s all been going pretty well. I wouldn’t say it’s been a smooth ride, but it wasn’t a really tough diagnosis. It just kind of all came together and I’m coming up on two years since that all happened.
How has your SCA affected your life?
For a while I didn’t really think about it much, especially after being told that I had just fainted. It was kind of confusing information for a 14 year old.
There wasn’t really a clear answer. I think the doctors might have been a little afraid to tell me because I was so young. But as time went on, I learned more about the condition, I knew that that is what actually happened. Because you don’t have CPR for fainting. So I kind of put that together on my own.
It kind of made me appreciate life a little more. Just like in a broader sense, because a lot of people don’t really realize how lucky they are to be here, and be so healthy with a healthy functioning heart. So it just made me more thankful.
I have family members who have also been affected by this. My mom, my grandma, and both her mom and mom’s mom both had a Sudden Cardiac Arrest in their 70s.
Definitely a very sad event and traumatizing to say the least. But it gives me a little peace of mind knowing that I’ve potentially helped so many family members. So I’d say it’s probably the biggest way it’s impacted my day to day life.
If you could give advice to someone who’s just gotten diagnosed, what would you tell them?
I know it can be scary at first getting told right away that this life altering event is going to happen. It’s a really hard diagnosis, but I guess, just tell them to just trust the process and see it through because there’s going to be a lighter thing at the end of that really hard place.
What do you want others to know about sudden cardiac arrest?
Just that it’s more common than people think.
Especially in a small town, when you hear about it, it seems like the biggest thing in the world. It kills so many people a year including student athletes. I just want them to know that it does happen – especially to student athletes – and to become CPR certified and use it when needed.
Can you delve a little more into specifically field hockey – how it felt to get your diagnosis as a hockey player, and how you went from getting a diagnosis to where you are today?
When I had my event and I was in the ER, everyone was texting me saying they were excited to see me back on the field soon. It wasn’t a big deal at first, I was still in shock, and so I was kind of expecting that I’d be back on the field that season.
I was expecting the next week, which is very unrealistic, but I just thought oh, I’m gonna be right back out there playing. But it wasn’t like that. It took time, it took months.
I played lacrosse too. And so when it was that season, we had a meeting with the athletic director and the athletic trainer just talking about a plan. I decided not to play lacrosse just because it was still kind of fresh and I wasn’t physically ready yet. I had gone months with no exercise and I wasn’t ready. The trainer suggested that we work out together and that she would help me kind of get back and start running, which was a big thing. We have a weight room in our school and we went on walks. And we finally got up to running. And so that was really good.
And then the next season came around, and I felt pretty ready. It wasn’t the easiest season in the world but it was good to be back with everyone. But playing was scary. It was very modified and there were some practices I didn’t even play because I was lightheaded. So the coaches were there, obviously, when I had my event and it was hard for them. They were super nice and welcomed me back. They were very supportive and told me to go off of how I felt. Everyone at the school was just so nice.
The person who actually gave me CPR, he was a special coach that came in just for that one day and happened to be a nurse. So it was very nice having him there at the right time. And he came back that season. And that was a really hard thing. I didn’t even go to that practice.
That was probably the hardest part of the season. But overall, it was pretty good.
Is there anything else that you would want to add to your story?
We’ve been working on setting up a screening program and we’ve been working with the cardiologist who actually diagnosed me. So we’ve been trying to just bring it to our school and everyone there is so on board for it. And the cardiologist is even going to try to bring that to our school to get student athletes screened and just students in general. We may possibly kind of combine it with a CPR class and maybe make a foundation.
We knew nothing about it prior. I think a lot of people confused me having Sudden Cardiac Arrest vs. a heart attack, which is definitely not the same thing.
Within a month or so of the event, things seemed to fall into place. And before I knew it, we were with Dr. Abrams’ team. Our family did genetic testing, and that fell right into clear diagnosis. So it got wrapped up from that diagnosis perspective, very complete and quickly which allowed us to process everything else that comes with that diagnosis.
We feel very fortunate we didn’t have to spend too much of our time trying to get a diagnosis, which I know a lot of people go through. I feel very grateful for that.
Oh god, this sounds traumatizing; I can definitely agree with everything said; I was diagnosed with Long COVID and I went though a few weeks of testing to see what was wrong. I was bedridden for just under 6 months and I had to quit all hopes of sports. I learned the importance of life and I learned that no matter what things will get in our way and we just need to get past them. It’s okay to fall as long as you get back up, it’s good to see you got back up just as I am starting to also. While our conditions aren’t the same, we both shared some valuable experiences and life lessons. I hope for both of our future health events to be clear and good luck moving on!! Good to you got up and moved on.
Piper, I’m so proud of you and your family, you all are amazing. You don’t know how strong you are until you are faced with something like this…like you said, valuing your health and life and what we previously took for granted.
Thanks for helping others learn about SADS and being an example of how to carry on, make adjustments but still live fully.
Thank you for sharing your story and your willingness to educate and advocate. Keep aging your bright light.
Piper keep up the good work! It is not easy to make a choice to become an advocate, but your story, his impact, and it is awesome that you are sharing it to help others. You seem to have a lot in common with my 16 year old daughter alexis who also has a long QT and had to fight her way back to sports. It is not easy, but really helps you to appreciate all the good things that you have going!