To read Part 1 of the story, go to Epinephrine Error - Broken Heart Syndrome, Part 1
How did you feel when you got the accidental IV push epinephrine?
“The effects were instant. I thought I was going to die–people say that all the time, but I really did. When the doctor ran in, I actually asked him to intubate me. I felt a massive amount of pressure on my chest, trying to take a deep breath felt impossible. My hands started to get numb, and I couldn’t even move them. After about 30-40 seconds I couldn’t talk anymore. At that moment, I truly thought I was going to die. My father was visiting his dad out of state so it was just my mom and me in the emergency room. I wondered if my dad would blame himself for not being here to stop it, and I worried if my mom would be able to live with herself after watching her daughter die. I thought about a lot of things I regretted and things I wanted to do that I would never get the chance to. I don’t remember much after that until waking up about 10-15 minutes later in the trauma bay. I had mild chest pain and a terrible headache, the worst I’ve ever had.”
What is it like going from the provider side to being the patient?
“It was very strange having my coworkers take care of me and probably even more strange for them to be taking care of me. In a way I think it made it worse that I knew what was happening. A heart is not designed to sustain such high rates. I was hypoxic which comes with its own set of serious complications. Knowing that I was in a very critical state was scary enough, but knowing the number of things that could get worse because of it was even scarier. I wore a monitor for the entire month of February, and the first day the company called several times to warn me that my rate was 200. After a while, they quit calling because it was happening all the time. My EP cardiologist said there was nothing more to do and I’d eventually outgrow it.”
How are you now, a year later?
“I have been very up and down since the incident. I would improve for a few weeks then get bad again, improve then get bad. Some days are good, some are bad. I can be asymptomatic with a heart rate of 180 or symptomatic–weak, light-headed, short of breath–with a rate of 130. Overall, I’m better than I was the first couple of weeks following the incident. I’m currently taking Cardizem and Corlanor which have been the best medications I’ve been on yet. Beta-blockers made me very tired, dropped my blood pressure, and never controlled the rate well. I still have random rapid rates, even at rest, but I don’t feel nearly as run down as I did on beta-blockers. I still struggle to exercise because it doesn’t take much for my heart rate to get past 180 with minimal exertion.”
What have been your greatest disappointments along the way?
“Although the medication changes, doctor appointments, and heart monitors have been difficult and inconvenient, the emotional aspect has by far been the hardest. It’s extremely frustrating and depressing. Between the cardiologists and cardiac electrophysiologists that I’ve seen, no one really seems to have a clear understanding of what is exactly wrong with my heart, and some have clearly thought it’s all in my head.”
“Probably the greatest disappointment was an EP study two months ago when the cardiologist said he didn’t find anything to ablate. It seems like there must be some irritable focus near the SA node that we could ablate and I’d go back to normal. Nothing else was working. When he said he didn’t find anything he could to ablate, I just cried. I’d pinned a lot of hope on an ablation being the fix. I felt like I was back to square 1 with no hope in sight. After the study, he said the same thing he’d said all along, that since I started with a young, healthy heart, and since the repeat echo had shown a resolution of the takotsubo and my ejection fraction had normalized, ‘ten months isn’t a long time to wait for the rapid rates to resolve.’ I’m seeing a new EP cardiologist now who says he can fix me, but he’ll have to crack my chest open to do it.”
How is your life different now?
“Prior to this incident, I was very active and healthy. I loved dancing. When I felt anything–anger, sadness or a passion about something–dancing was my outlet. Not being able to run or dance like I used to is hard, but even daily life is very different. It’s embarrassing when I have to pause halfway up the stairs at school, or need to ask for a break during a long-distance walk. I always feel like I need to explain myself which is hard for me to do, and it’s even more difficult for people to understand. I do often feel like an inconvenience to my family and friends when I can’t participate in things like I used to. Going to Disney was one of my family’s favorite things to do. Now walking around the park alone is hard for me, but I can’t go on rides anymore either because they could trigger a lethal rhythm. I’ve lost friends because of this, mostly because I cancel on plans when I didn’t feel good. Eventually, I just stopped getting invited.”
What kind of support, or lack of support, have you gotten?
“I’ve been shocked by the amount of both. I’ve received a good amount of negativity which is unfortunate. On the outside, I look very healthy, so I understand how people could think I’m being dramatic when I have symptoms. The low point was when a charge nurse who knew how my heart was damaged had the gall to say, “Let me explain Munchausen’s to you.” My heart rate was 180 at the time, and I was lightheaded, but she judged me to be lazy and dramatic. On the flip-side, I’ve also received so much love and positivity from others–it’s amazing, and I’m beyond thankful. I am so grateful that I have the support system I do have.
Are you still hopeful that you’ll get back to normal?
“I have remained hopeful from the very beginning that I will get back to normal. That’s not to say I don’t have days where it seems like I won’t ever get better. If this new round of medications doesn’t work, we will discuss surgery. If we have to crack my chest to do an ablation from the outside for me to be able to run again, it’s worth it. I know I will eventually get there.”
Author’s Note: In March of 2018, a team of researchers led by Caroline Scally of The Aberdeen Cardiovascular and Diabetes Research Centre, University of Aberdeen, United Kingdom, published the results of a study representing a major paradigm shift. Their findings soundly refuted the general assumption that because there is an apparent rapid recovery of left ventricular ejection fraction, ongoing patient complaints of continued symptoms are due to anxiety or mental problems. Scally’s group studied thirty-seven patients who had experienced takotsubo cardiomyopathy, comparing them to a carefully chosen control group matching the patients’ ages and comorbidities. They concluded: “In contrast to previous perceptions, takotsubo cardiomyopathy has long-lasting clinical consequences, including demonstrable symptomatic and functional impairment associated with persistent subclinical cardiac dysfunction. Taken together our findings demonstrate that after takotsubo cardiomyopathy, patients develop a persistent, long-term heart failure phenotype.”1