The Heart of the Story: A first-hand patient experience

Editorial note: This is the second in a four-part series written by Alexis Kern, a creative in our Phoenix office, about her experience with Myocarditis, a rare cardiovascular disease. To mark American Heart Month and Rare Disease Day, she will be sharing 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. Read part one here.

By Alexis Kern

When you first get sick, you never expect to be admitted to the hospital. But that’s exactly what happened to me when I got myocarditis, a rare heart disease. What I didn’t expect was how long I was going to be in the hospital or everything that I’d end up going through. I was supposed to go on vacation a few days after I went to the hospital. I thought I was just going to be there for the night, and then I’d be able to continue on with my plans. Ha! I was in for a rude awakening.

There’s not much you can control in your life. But what you can control is how you choose to handle yourself and your state of mind when you are in a situation that you can’t control. When I first got to my room in the ICU, there was so much going on. There I was, semiconscious, lying in my hospital bed, listening to all the doctors and nurses talking back and forth to each other about my condition and what they had to do. All I kept thinking was that they knew what they were doing, so I should just go along for the ride.

Hello, ICU

You know that expression “one step forward, two steps back”? Well, that was my hospital stay. I had these moments where things didn’t go right—which I started affectionately calling blips. I had a blip 15 minutes into my stay in the ICU. My vein didn’t really like the blood pressure wire, so the vein started to close up and caused a massive hematoma (in plain speak: a huge black and blue bruise). Luckily, they checked it in time, or else I could have lost my leg. That’s one of the things that became my badge of honor during my stay.

I knew that getting better was not just on the doctors and amazing nurses. It had to be on me as well. Coming from the agency world and working on developing visual sales aids, participating in countless market research sessions, and listening to patient testimonies, I knew how patient noncompliance could lead to poor outcomes. So, while I acknowledged that the doctors and nurses knew more than me, they also needed my input and my commitment to getting well in order for them to fully do their job. Data generated from tests were only half the story; I had the other half of what they needed, so I spoke up as much as I could.

And in the long run, those conversations were what helped me get better. Every time I had a blip, the nurses and the doctors responded. When it was hard for me to catch my breath, my doctors rechecked my numbers, and I got a stronger temporary pacemaker instead of a pacing wire. When the doctors and nurses noticed that my platelets were low, they explained to me that I needed blood transfusions. And when I was told that I couldn’t move my leg because of the automated heart pump device that was inserted into my femoral artery to function as my heart, I laid in bed with my leg straight—for eight days. It was that partnership that really helped me on my journey.

For those eight days I had the heart pump device inserted, only certain nurses were certified to have me under their care. And because it was a newer technology, I got to meet the representative who was helping the staff learn and operate the device. It was amazing to actually see the rep in action, watch him teach the nurses, and answer any questions. I felt as though I was in a research session, and that familiarity helped to keep me grounded.

Modern technology comes to life

Modern technology is amazing. In the healthcare space, we hear about all these devices and how they help patients. Now, I wasn’t just reading about all of them—I was experiencing it firsthand. In my first hospital stay, I had two different pacing devices for my electricity, an automated heart pump that moved all the blood around in my body so my heart could rest, blood transfusions, a few trips to the cath lab, an echocardiogram every day, and even an MRI or two. Each different technology played its part, and each time I experienced a new one, I was mentally prepared to be a partner with the doctors, nurses, and technicians.

I did everything the doctors asked me. I had dialogue with them in turn. At the end of the day, I really did have a broken heart—and time, patience, and an understanding of the medical world helped me to heal.