Editorial note: This is the last 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, part two, and part three.
By Alexis Kern
When you go through something drastic like myocarditis, a rare heart disease, you become acutely aware of every little thing in your body. I had experienced having an “off” heart, so I knew what it felt like when something wasn’t right. Before my second hospital stay, I had been coughing a ton, was super exhausted all the time, and couldn’t walk long distances. I’m also the person who likes to sing along to every stupid song on the radio—I couldn’t sing more than a couple of words without coughing.
Lo and behold, I found out I was in full heart block again when I went to an urgent care center on the recommendation of my doctor. Heart block is when the electrical signal that controls the heartbeat is partially or completely blocked from reaching the ventricles (the lower chambers of the heart). My heart was not communicating with all the different chambers. So, even though I left the hospital for the first time with no real medication or any sort of pacing device, it seems my heart was having more trouble healing than my care team and I realized.
With all the inflammation, my electrical system didn’t quite catch up with the rest of the healing in my heart. I was monitored for two weeks before the doctors decided to implant a permanent pacemaker. Before that happened, I had a pacing wire in my neck, and then I got a semipermanent pacemaker to see if it was what my body needed. Between both hospital stays, I had five different types of pacing devices before I got my permanent pacemaker. I am now bionic. I love technology.
After 6 weeks post–pacemaker surgery, I was allowed to start cardiac rehab again. And that’s where my full road to recovery truly began. I walked on the treadmill. I tried to walk the streets of the city without stopping. I tried climbing steps in the subway station. I walked my awesome dog every day. I went back to work, and I tried to make it a full day sitting up.
I learned that I had to give my body permission to take the time it needed to heal. I had to be the one who was compliant and follow the advice of my care team.
Time heals everything
We’ve all heard that experience is the best teacher. Because of everything that happened, I’m now so in tune with my heart, so I know when it’s off. Luckily, those days are now very far and few between. But my time in the hospital and my post-care were definitive learning experiences, and I am so thankful to have had some of the best care.
It’s been three and a half years since I had myocarditis, a rare heart disease. I’m not going to lie—the road to recovery was not easy. I had a lot of bad days at first, but over time, I had more good days than bad. Today, every once in a while, I get sleepy. I still have trouble walking up hills and steep inclines. But I am so much stronger than I was six months ago, and I know that in six months, I’ll feel even stronger. I barely use the pacemaker anymore, but it’s good to know it’s there as a backup system. I spin twice a week, I’m back to doing yoga regularly, and I have started hiking in my new home state of Arizona. And, of course, I sing as loudly as I can (in the car) when a great song comes on.
When the patient becomes the ambassador
My time in the hospital, with all of my medical devices, cardiac rehab, and recovery, has helped to enhance who I am today as a creative. Just recently, I was sitting in a client meeting, and they were talking about developing pieces not only for the patient, but also for the care partner. All I
was thinking was, “YES—this client gets it.” My care partners were everything to me while I was healing. They probably had even more questions than I did. And if I could help to create pieces that would support those care partners, to give them the information that they need, then I would be able to contribute with firsthand experiences.
I look back at my experiences with the nurses in the hospital, and I know that without them, I would not have gotten the care that I needed. As a patient, they were an extension of my care, and they told the doctor all the things that I couldn’t. They also helped to decipher the information that the doctors were giving me that I couldn’t understand. I know they are the gateway to excellent care.
When I was in the hospital, I talked to the doctors on their level because of all my years of experience in healthcare advertising. I saw how they took all the information that I had helped to develop and really implemented that in their practice. I know that what my team and I create is important, and all the research and development that goes into everything is really absorbed with care and concern before it’s implemented. The next great technology that comes out can help save someone else’s life, like it did for me. And I can help create those pieces that will ensure the doctor knows how to use them.