Casey L's Story

Updated: May 7, 2020

My brother, my mom, and I were at the mall in some department store. As we were doing the usual shopping, I saw my mom have an episode for the first time. Instantly, I could see the panic in her eyes as she began pouring out the contents of her purse on the floor. Searching on her knees, she found the pill she was looking for. At the time, I knew it had something to do with her heart but that it was not a serious situation. But as a five year old, I remember being scared and confused. This experience was just one of the many that prepared me for my own episode. Not until I was older, did I realize that the pill she was looking for was a Valium and that a heart disease called SVT (Supraventricular Tachycardia) caused the episode that she was having.

Growing up, I always knew that my mom had a heart disease. One morning before school, my grandmother found her lying in bed with a rapid heartbeat. After being taken to the hospital, my mom was diagnosed with SVT at the age of twelve. As it was 1973, there was no operation for this disease, and she was given Valium to take whenever an episode occurred. This would calm her down and lower her heart rate. There was no rhyme or reason as to when an episode occurred, but it occurred maybe once or twice a year for her. As she told me these stories and as I witnessed her have an episode every once in a while, we never thought that the disease could be passed on because my mom was the first person in her family to ever be diagnosed. Later on, we would find out that the disease is hereditary and most common in women.

Some ten years after the department store experience, I had my first episode. I was a sophomore in high school, playing on varsity soccer. During our scrimmage at the end of practice, I felt my heart rate become rapid and found myself short of breath. I cannot explain how or why, but I immediately knew that this was exactly what my mom had. Knowing that it was not a serious problem and not wanting to cause a scene, I played through it and practice ended about ten minutes later. By the time I made it the car and told my mom what had happened, the episode had stopped. Naturally, my mom was upset that I had played through it and we went immediately to the hospital. Because there was no irregular heart beat to record, there was nothing the hospital could do for me. And because it had stopped on its own, we decided to just wait and see if it happened again.

Two weeks later, I had another episode at the end of soccer practice. This time, it was still occurring when I got to the car and told my mom. She was nervous because she had never had an episode while she was working out and had never had two episodes so closely together. We went straight to the hospital. But of course, while in the waiting room, my heart rate had slowed back down to normal and we were unable to record my heartbeat. However, my parents knew that I needed to start seeing doctors to make sure that this was actually SVT.

Mass General Hospital in Boston became my second home as I started seeing several cardiologists. I had an ultrasound, multiple EKG’s, and was given a recorder to carry with me everywhere I went. They could run as many tests as they wanted, but until they actually caught the irregular heartbeat on a device; there was nothing they could diagnose. For six months, I carried that device everywhere with mixed feelings. A part of me wanted it to happen again, so I could get diagnosed and figure out what to do. But another part of me never wanted to experience that uncomfortable feeling again. Never mind, having an episode in school. I was so nervous that it would happen with a teacher I wasn’t comfortable with or during a test. During those six months, I never had an episode and returned the device to the cardiologist, thinking my two episodes were just a fluke.

But then, on March 9th, 2007, as I walked from Algebra to AP U.S. History, I felt that rapid heartbeat and that shortness of breath. Terrified that it was happening again, I knew I needed to call my mom as soon as possible. Sometimes, at the beginning of an episode, you feel like you can stop it before it starts. As I sat in History, trying to stop it and waiting for my teacher to stop talking to another girl in class, I realized I was not stopping this anytime soon. My History teacher, Mr. Gallivan knew I was having heart problems that year because I had missed so much school. As I walked up to him to tell him that I needed to go to the nurse, he knew something was wrong right away. He said, “You look pale as a ghost.” I laughed and told him that my heart was going off and that I needed to call my mom.

As we started down the stairs, he offered to carry me, not fully realizing if this was a life or death situation. At the moment, I started crying. Naturally, during a crisis, the nurse’s door was locked because she was at lunch. He brought me to the principal’s office, while he went off to find the nurse. She came rushing over, measuring my heartbeat. During an episode of SVT, your heartbeat jumps from 60 BPM to between 200 and 300 BPM. Once she realized it wasn’t slowing down, she called an ambulance and I was mortified.

No fifteen-year-old girl wants to be the girl that was taken from high school in an ambulance. Luckily, everyone was in class and there wasn’t an audience for this embarrassing spectacle. As the EMTs walked in with the stretcher, my embarrassment only deepened. Being protocol, I had to get wheeled out on the stretcher and into the ambulance. While in the ambulance, my mom pulled up to the school, telling them to record my heart rate. After finally getting my heartbeat on record after eight months of waiting, they had to bring my heart rate back down to normal. There is a drug called Adenosine that is used to bring your heart rate down in an instant. No words can do this experience justice, except that it felt like a truck was hitting my entire body. As awful as that feeling was, I was finally properly diagnosed. With new technology, there was now a barely invasive surgery that both my mom and me could get so that we would never have another episode. On June 18th, 2007, I had a successful heart ablation and have not had another episode since.

With SVT, there is always a chance that it can return. With a heart ablation, they go into the heart and find the extra circuit that causes the rapid heart rate – and they burn that part of the heart. I am so thankful that this technology exists, but the anxiety of heart disease remains. I still get flutters that feel like my rapid heart rate will start. I’ve cut out caffeine and energy drinks, because anything that makes my heart beat fast proves to just be unnecessary anxiety. It makes me nervous to think the circuit can open up again or find a new path through the scar tissue, but I remain positive and visit a cardiologist every few years to just check-in. I also realize that if I have a daughter, there is a very real chance that this can get passed down – as it did with me and my mom. I am so lucky to live the life that I do now, but heart disease is something that is always just in the back of your head.

#SVT #supraventriculartachycardia #rapidheartrate #heartablation #soccerplayer #hereditary

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