At one point, a chaplain came in to pray with me, as my life was hanging by a thread.
Driving home from a summer vacation in July, 2017, I started to feel lousy. My throat hurt, my head hurt, and I knew I was coming down with something. I saw my primary care physician multiple times over the next few weeks. He prescribed different antibiotics and even did a vitamin C intravenous drip, but my condition worsened. On a Friday afternoon, later that month, I began to retain water, my stomach was distended, and my urine output was very low. At that point, I knew something was very wrong and I went to the emergency room of my local hospital.
There I underwent testing and after several long days I was eventually diagnosed with Myocarditis. However, the hospital did not have the means to support my condition, and I continued to deteriorate…quickly. At one point, a chaplain came to read me my last rites. The doctors had simply given up and had resigned to letting nature takes its course.
My sister frantically began a crusade to have me transferred to a hospital better equipped to handle advanced heart failure. Thanks to a friend on the board at the University of Chicago Medicine, I was picked up in one of their ambulances and transferred that evening. This favor saved my life. I share this detail because it illustrates the need to advocate for better care if you or someone you love isn’t receiving it. Additionally, it shouldn’t take a family friend in influential places to get it.
At the University of Chicago Medicine, I underwent open heart surgery to place a Biventricular assisted device (BiVADs) behind my heart to help support blood flow and I was connected to an ECMO (Extracorporeal Membrane Oxygenation) machine. These two pieces of equipment took over the function of my heart. The goal was to buy me time to heal from pneumonia and to keep me alive for a heart transplant. During this surgery the doctors also took a biopsy of my heart and changed my diagnosis to Giant Cell Myocarditis.
While I was on the ECMO device, my heart started to recover. A week later, the doctors felt confident I could be removed from the ECMO device, and I continued to improve unassisted. After a month in the ICU, I was finally cleared to leave the hospital with my own heart. Thank you, University of Chicago Medicine. Thank you, Leslie (my sister).
Eight years later, I’m still going strong. The journey has been long, but steady. I’m no longer on steroids; I take a few medications for my heart, but overall, I feel pretty great. I work out regularly at Orange Theory and play pickleball three times a week. I work hard to keep my heart as strong as possible. I never want to take it for granted again. And like all of us survivors, I worry about every irregular heartbeat and any unusual sensation in my chest.
I read something recently that really struck me, and I share this for those who are at the early stages of recovery; Good health is like a crown that the healthy wear, but only the sick can see.
I hope my story brings hope to those who read it. And for those who have lost a loved one to myocarditis, I am so very sorry. I don’t know why I survived while many others have not. And I’m especially saddened to hear about children and young people passing from this terrible disease. I am heartbroken for their parents. These stories are often accompanied by unanswered questions from mothers and fathers wondering what they should have done, or why they did not see it coming. I hope to provide some peace and say, you couldn’t have done anything differently. Myocarditis doesn’t present like anything remarkable until it does, and by then it’s often too late. The common thread in each story seems to be a lack of a timely diagnosis. I went untreated and undiagnosed for almost three weeks. Raising awareness about myocarditis is paramount to helping more people survive. I hope to do my part in this fight and to help save the precious lives of those who might suffer.
