“I am Grateful for the Myocarditis Foundation”
By: Cheryl Whaley
Fort Worth, Texas
In September 2022 I had a cold with laryngitis. About 3 weeks later, I began feeling my heart beating and a dull ache in my chest. My spouse decided to purchase a Kardia monitor to see if the symptoms were related to my heart. The monitor showed some arrhythmias. I decided to make an appointment with my primary care physician as my symptoms would become uncomfortable and then disappear. My PCP ran an EKG. She advised me to seek a cardiologist and go to ER if symptoms worsen. It would be 2 months before an appointment was available for the cardiologist. I scheduled the appointment and was added to a wait list. I got the call that a patient had cancelled and the doctor could see me within the week. I would have an EKG and Stress Test completed. The cardiologist concluded that with my symptoms and results of the Stress Test he thought I had had a heart attack and needed a heart catheter/angiogram. Surprisingly the procedure resulted in no blockage to affect my heart and the cardiologist diagnosed me with Myocarditis. Treatment began with medicines to help my heart heal. I started feeling better and feeling less of my heart beating in my chest. A few months went by with very little symptoms. Until a tooth ache in February 2023 started up my symptoms again with the feeling of my heart beating in my chest, shortness of breath, and back ache. I had my wisdom teeth pulled. My teeth felt better, but my heart symptoms worsened causing high blood pressure in which I went to the ER. The ER doctor treated my high blood pressure, and I went back to everyday life. The symptoms got better until March 2023. I had a cold for 2 weeks and then began feeling better, then the heart symptoms were back again. My cardiologist ordered a portable heart monitor. The monitor showed LOTS of PVC’s and Atrial fibrillation in which I was started on a blood thinner. I just kept thinking about what Myocarditis was and what treatments were available. I knew that I wanted to get a second opinion but did not know where to turn. I did my research online and found the Myocarditis Foundation. I called and began talking to Genevieve Rumore about my symptoms and situation. She kindly listened and then told me about the Foundation and research for Myocarditis. She asked me again about my symptoms and informed me of some cardiac specialists who were only 45 minutes from where I live. She gave me information on who I needed to call.
I am grateful for the Myocarditis Foundation and Genevieve because the next day I scheduled an appointment with a cardiologist at that hospital. Fortunately, due to another cancellation, they got me in quickly to begin the evaluation process. After that appointment, my symptoms were getting much worse and I could barely walk across a parking lot or hold a simple conversation without struggling to breathe. A cardiac MRI was scheduled for about a month later. I did not make it to the MRI. I ended up going to ER and was admitted to a local hospital near my house with all sorts of cardiac arrhythmias and unknown issues. They even thought I was having a heart attack (turns out I did not have one again). A doctor, who had done his residency at the other hospital where I was seeking my second opinion, was assigned to my case. He knew my symptoms were more than they could manage at this hospital and contacted the Cardiology team at the other hospital, reviewed my records, and let them know I would probably not make it to my MRI appointment 2 days away. This doctor was key in getting me the medical help I needed and recognizing the pattern of my specific heart symptoms from his training previously. I am blessed he was on duty that day and he led me to the care I needed. So at midnight I was sent by ambulance 45 minutes to the hospital that Genevieve had previously told me about and where I was already working to become a patient of one of the Cardiac Specialists. There were lots of tests done while I was in the hospital. Then one of the many cardiologists I had met over the course of my stay came to my room and told me that it had been concluded that with my symptoms and test results, I had what is called Cardiac Sarcoidosis. He explained it is a type of Myocarditis (inflammation of the heart). I had never heard of Sarcoidosis. I was still learning about the symptoms and treatments for Myocarditis. Sarcoidosis, is most commonly found in the lungs, but can affect any organ and in my case, it was my heart. I was released from the hospital and began many new medications, rested, and began to feel better.
It is almost a year later, and I continue treatment, ongoing tests, and monitoring with support of a good medical team, family, and friends. I am grateful that I was able to make that call to the Myocarditis Foundation. Genevieve listened and guided me to the expert medical team I needed. She is truly an angel on my journey. Sarcoidosis typically takes a long time to diagnose and without the help of Genevieve and the Myocarditis Foundation, I know my journey to a correct diagnosis would have been prolonged. I praise her and the Foundation for being there for me so that my condition did not worsen over time. I believe this intervention helped save my life. There are days I struggle, but I am here to share my story and the many blessings I have found along the way. My hope is that through research, more education, and the continued dedicated work of the Myocarditis Foundation, the journey will become easier for anyone suffering from Myocarditis and related diagnoses such as Sarcoidosis.
