Misdiagnosed: I Lived With a Dangerous Heart Arrhythmia for Years
This woman had an arrhythmia for nearly a decade but it never showed up on tests. Here's how she finally dealt with it and is helping others do the same.
Courtesy Jami Carder, BSN RN
By 2030, an estimated 12.1 million people in the United States will be diagnosed with atrial fibrillation (AFib), the most common type of treated heart arrhythmia, according to the Centers for Disease Control and Prevention. But AFib is only one type of arrhythmia. And this change in the rate or rhythm of the heartbeat—which can cause the heart to beat too fast, too slowly, or with an irregular rhythm—often occurs randomly and can therefore be difficult to diagnose. Just ask Jami Carder. It took years for her to prove she had an arrhythmia and get the treatment she needed. This is her story.
My arrhythmia started when I was in my 20s. I knew right away that’s what it was. It felt like a fluttering in my chest, or like a big thump, thump, thump. Normally you don’t feel your heart beating unless you’re exercising. But I would be at rest and then all of a sudden it would start fluttering. Or I would be sitting and suddenly feel as if I had just run up and down the stairs. But it was totally random and unpredictable. And it never seemed to last too long.
Through my work as a nurse, I did know some maneuvers that were supposed to stop an arrhythmia. I would hold my breath and bear down (like you would during a bowel movement) or I would cough forcefully. A lot of times, that would do the trick and it would stop. I was busy working and raising two kids, so I would feel concerned when it would happen. But then it would stop and I’d feel totally fine. So I brushed it off and didn’t do anything more about it for years.
It was probably in my early 30s when I noticed that the arrhythmia was happening more often, so I reported it to my primary care physician. I went in and they ran an EKG. But the EKG was normal so they just sent me home. Then the arrhythmia began happening more often and lasting longer.
At one point I got poison ivy and had to go on prednisone, which made the arrhythmia happen at least once a day—more frequently than ever before. So I decided to go to the emergency room. They put me on a 24-hour monitor. But by the time I got home and started the test my heartbeat had returned to normal. And, of course, it didn’t happen during the following 24 hours.
Looking at my normal test results, the physicians didn’t say that they didn’t believe me but that was the vibe I felt. I went home feeling rather deflated and embarrassed.
After that, my arrhythmia began happening at work. At the time, I worked on the telemetry floor of the hospital, which is where we monitor the vital signs of patients with critical conditions.
One day I started to feel the fluttering, so I grabbed a heart monitor that wasn’t being used and hooked myself up. The machine said my heart rate was at 208 and the alarm went off to alert the doctors and nurses. One of the doctors became really panicked and demanded to know which patient it was. When I told him it was me, he said that I needed to go to the emergency room right away because I was the sickest person on the floor!
I didn’t participate in his panic, explaining that it happened often and that my heart rate would return to normal—which it did. But luckily, I was able to print out the data from the machine. Finally, I had proof that my arrhythmia was real! (Here’s what happens when your heart stops beating.)
Tests and treatment
That same day, I took my printout to a cardiologist, who sent me to an electrophysiologist for EP studies. Those are the ones that require you to lie on a table so they can put catheters through the vessels in your groin area and snake them up to your heart. Once in, they can induce the arrhythmia and map out the electrical pathways in your heart. They found the arrhythmia and performed an ablation, a procedure that prevents the heart from using the incorrect pathway causing the irregular heartbeat.
The second arrhythmia
After the ablation, they performed another test to make sure everything was fixed, at which time they found a second arrhythmia. It turned out that when I felt the fluttering in my chest that was from one arrhythmia, in which my heart was using a shorter loop on the electrical pathway than it was supposed to (known as AVNRT). But the second one, which had been causing the thumping sensation, was a different pathway that was going in reverse (that one was known as AVRT).
The heart is not supposed to have these wrong turns and shorter loops available. But no one is perfect. When an arrhythmia happens, the heart gets stuck on the wrong loop and keeps going around and around.
In my case, the brakes would eventually kick in and it would go back to the normal pathway. Nonetheless, they ablated the second arrhythmia, as well, and I went on my way.
Living and advocating
I had the ablations around 2012 and didn’t experience the arrhythmias for quite a while. They have started to return occasionally. But they’re not nearly as frequent as before, so I feel like it’s very manageable.
In the past, my arrhythmias would kick in if I was feeling really stressed or was having an argument. In the time since, I have taken steps to reduce my stress. I’ve made lifestyle changes like practicing meditation. Not every illness can be healed by your mind. But I think a lot of them can be helped by reducing your stress load and taking care of yourself. Today, my arrhythmia is extremely rare as a result.
My experience also changed how I treat my own patients. If they complain about something and the tests are negative, I try to advocate for them and push for more tests because of what I went through.
These days, if someone complains of their heart racing or skipping a beat we will put them on a monitor for two weeks. The longest I was ever on one was 24 hours. I think that’s why so many people are never diagnosed with an arrhythmia, but I’m trying to make sure that none of my patients ever fall into that category. (Next: Learn 6 types of heart disease and their warning signs.)
—As told to Alyssa Sybertz