The Heart of the Story: When the healthcare creative becomes the patient

Editorial note: This is the first in a four-part series written by Alexis Kern, a creative in our Phoenix office, about her experience with a rare cardiovascular disease. To mark American Heart Month and Rare Disease Day, she will be sharing over the next four weeks how her work in the healthcare industry impacted her as a patient, and how being a patient now influences her work. We hope that by Alexis sharing her story, we can help bring awareness to these two subjects.

By: Alexis Kern

Did you know that according to the CDC, one person dies every 37 seconds in the United States from cardiovascular disease? That means around 647,000 Americans die from heart disease each year—approximately one in every four deaths.

Thankfully, I wasn’t one of them.

This isn’t a story about a typical cardiovascular disease, and I am not going to tell you how choosing a healthy diet, exercise, and reducing stress will lessen your risks of being diagnosed with heart disease. Why? Because I did all those things.

I was a healthy 40-year-old woman who was physically active and ate well. I had been gluten-free for seven years, I played soccer, practiced yoga regularly, and took modern dance class lessons. I worked hard, but I had an active social life and the support of great family that kept my stress down. But all of that didn’t matter to the virus that was attacking my most important muscle. It hit me like a ton of bricks and knocked me down. And I didn’t even know it was my heart that was being affected.

How did it start?

In May of 2016, I wasn’t feeling great. I had what I thought was a really bad cold, or the flu, and was on my way to getting bronchitis. I had been sick for over a week and had just finished taking a course of antibiotics, but my symptoms came back, and they came back with a vengeance. I was coughing, extremely tired, running a fever, short of breath, and had started to sweat uncontrollably. Classic signs of the flu, or even mono.

Then, one night, right after I had finished my antibiotics, I wound up not being able to walk back to my bed after getting a glass of water. I woke up a half hour later on the floor near my bed, thinking that there was no way I could get to the phone even if I tried. So, I laid there on the floor until I had enough energy to get back up and get into bed.

I knew I was sick, but I never thought that my symptoms were actually something life-threatening. We are taught that heart disease symptoms include chest pain and numbness in your left arm. But there is so much more, especially for women. Sometimes, symptoms of serious heart conditions can include fever and chills, fatigue, headache, lightheadedness, body aches, joint pain, sore throat, and swollen ankles and feet. But why would a healthy 40-year-old be looking for those symptoms related to heart disease?

The next day, I went back to the doctor. After an examination, which included listening to my heart, my doctor suspected something was wrong and ran an EKG. Her quick thinking led me to the NYU Langone Hospital, where I was immediately rushed into the cath lab, because they thought I was having a heart attack. My gut told me I wasn’t having a heart attack, but I knew something was really wrong.

And that is where my journey with myocarditis began.

I have what?

Myocarditis is a rare heart disease often caused by a viral infection that leads to inflammation of the thick, muscular middle layer of the heart (myocardium). According to the Myocarditis Foundation, myocarditis is classified as a rare disease, but it may affect as many as 3.1 million patients worldwide.

The inflammation of the heart affects your internal electrical system (the thing that makes your heart beat) and causes your heart to pump abnormally. The inflammation can also lead to a buildup of scar tissue around the heart muscle, which makes it harder for blood and oxygen to flow throughout the body. When left untreated, your heart can weaken and eventually fail; serious arrhythmias can even cause sudden death. In severe cases, a heart transplant may be required.

Difficult diagnosis

Why is myocarditis so difficult to diagnosis? The disease presents as many different symptoms, and doctors have to run many tests in order to fully identify that the heart muscle is actually what is being affected. And, sometimes, there aren’t any symptoms at all.

When they finally do present, patients can mistake it for a cold, the flu, or just exhaustion. Even basic tests can work against you. In my case, EKG results first suggested I was having a heart attack, so they rushed me to the cath lab. In the moment, they didn’t know my heart was inflamed and not working correctly.

From what I remember (because I was pretty delirious at this point), the doctors inserted a camera because they thought I was going to need a stent. The next thing I knew, about 30 doctors and nurses came into the cath lab to try to stabilize me.

And this is just the beginning of how my body fought to recover and fight back against this rare disease.