In February of 2009 I became ill. I was in history class, in my senior year of high school the week before February vacation. I was sweaty, short of breath, and was having palpitations. I went to the nurses office where I was told I had elevated blood pressure. She said it was nothing to worry about but it should be something I follow-up with my primary care doctor. I felt better and finished the school day.
I went into work later that evening and was standing when the symptoms returned, only this time I felt dizzy. I had never passed out, but if I had to guess what a pre-syncopal episode felt like, that would be it. I was sent home and my mom and I decided it was best if I was seen at the local emergency room. It was there that my life changed forever.
Seven words strung along in a sentence that held so much power. In that moment I didn’t know what those seven words were going to mean for me. “There is something wrong with your heart”. There they were, and that was the start of it all.
I remember my mom, who so badly wanted it to just be symptoms of anxiety, visibly scared. She didn’t want to hear those words either. None of us did.
They couldn’t handle my care there and needed to send me into Boston. It was late and I’m not sure the hospital I was being transferred to had a bed or if they were waiting on a transport team, but I was admitted for the night and transferred out the following morning.
It was my first time in an ambulance. I remember the paramedic and EMT like it was yesterday. It was the longest ride I’d ever taken. Seven words created one million thoughts and my mind was racing through them faster than the speed of light, it seemed.
We arrived at Tufts Medical Center where I was brought to a room on North 6 with my mom in tow. We were immediately welcomed with open arms by the nurses and techs. Of course with protocol, I was poked and prodded and asked the same questions over and over again. I started, one by one, meeting the team.
They started to explain what was found on my EKG and what it meant. I was showing an abnormal heart rhythm consistent with Brugada Syndrome. In layman’s terms I was showing a rhythm consistent with a syndrome also know as Sudden Death Syndrome.
I spent the weekend with not much to do rather than worry, but we had a plan for Monday. I went through a multitude of tests that following week. Brugada was, and probably still is considered to be a new syndrome. That’s not good in the medical world, because that also means there is not much knowledge about it. Tests were coming back somewhat normal except for a mildly reduced ejection fraction on an echo which indicated a cardiomyopathy but they were hoping it was viral.
My testing ended with an EP study. Aka Electrophysiology Study which tests the electrical conduction system of the heart to assess the electric activity and conduction pathways of the heart. During this test they would try and induce the bad rhythm and if they were able to then I would wake up with an implantable cardioverter-defibrillator (ICD). We were told that the EP study could take anywhere from 2-6 hours and the ICD, if needed, would take about an hour.
That was the first time of many that I’d be wheeled away from my family to go under anesthesia. I was 18 years old. I was old enough to sign my own consent forms, but I didn’t feel old enough to understand or even comprehend the risks. That was also the first time I’d ever seen a procedure room.
I immediately felt intimidated by all the staff and equipment, all the questions, electrodes, IV’s, defibrillator pads, and timeouts. I was terrified. I kept thinking to myself “I wonder if I have to do this?”, “I wonder if I can change my mind?”. I laid there, completely still, paralyzed by fear and with tears rolling down my face. The nurses were wonderful and have become such a huge part of my life now but in that very moment I couldn’t focus on anything other than the fear. Then I was asleep.
I woke up with bright lights shining in my eyes. I had a couple doctors standing over me scraping, and pulling away at my chest. I wasn’t in pain but I felt a lot of pressure. They didn’t notice I was awake and I convinced myself that they were trying to save my life, I thought there was a complication and they had to crack my chest. I couldn’t talk, I couldn’t move, but a few tears came rolling down my cheek and the anesthesiologist noticed I was awake. I was told that everything was fine and then I was asleep again.
I woke up with a defibrillator. Something I had to learn to live with and to trust with my life. Try convincing someone with anxiety that a pager-sized device is going to save my life. I was told I was safer than when I came in. I of course agreed with them and didn’t fight it, but I didn’t believe it. I couldn’t wrap my head around that. I was discharged home the following day, and returned to school that following week.
Seven words changed my life, but I had no clue what was to come.
katebinnall 