My Journey with Recurrent Pericarditis: A Diagnostic Odyssey
By Matt Brandstein
My life took an unexpected turn in 2022 when Recurrent Pericarditis (RP) entered the picture without warning or a clear cause. What followed was a frustrating diagnostic odyssey marked by a misdiagnosis and delays in crucial care. Prior to this, my life was defined by activity: a demanding new leadership role at a tech company, an ongoing MBA program, and a vibrant social life. I thrived on being busy.
My first flare occurred in November 2022. The symptoms – moderate chest pain, shortness of breath, fatigue, and chills – were alarming and unfamiliar. My primary care physician attributed them to acid reflux, a conclusion that didn't resonate with me, though I lacked any knowledge of pericarditis at the time. Over a week, the symptoms subsided, and I dismissed it as a strange episode.
In April 2023, seemingly innocuous viral symptoms emerged: face pressure, fatigue, and minor sinus issues. I believed it was a common cold. Within days, these symptoms vanished, and I felt well enough to attend an MBA dinner. That night, my life changed dramatically.
Severe chest pressure, fever, and shortness of breath jolted me awake. Recalling the previous chest pain that had resolved on its own, I initially hoped this would too. However, my condition worsened rapidly, forcing a visit to urgent care. An EKG revealed evidence of pericarditis, with the doctor mentioning a small possibility of something more serious, like a heart attack. A cardiologist referral was necessary for a definitive diagnosis, but the earliest available appointment was days away. Hesitantly, I returned home to wait.
The waiting period was agonizing. The pain intensified to an unprecedented level; every movement brought excruciating chest pain. It became clear that waiting any longer was not an option, leading to my first ER visit, where pericarditis was confirmed. After a thorough evaluation, the ER staff attempted to discharge me. Upon standing, my blood pressure plummeted, the room spun, and my hearing faded as I collapsed back onto the bed. Multiple failed attempts to stand led the night shift doctor to admit me for further testing.
A comprehensive workup revealed alarmingly high inflammation levels, fluid in one lung, and excess fluid around my heart. Early in my hospital stay, a resident's mini echocardiogram showed my heart seemingly struggling against the surrounding fluid, a stark image that prompted my family to rush to New York City. Hours later, a formal echocardiogram indicated that surgery wasn't immediately necessary. I was discharged with medication and a follow-up appointment with a cardiologist.
Back home, familiar symptoms resurfaced: low-grade fever, chest pressure, shortness of breath, dizziness, and mounting anxiety. Desperate for answers, I sought additional medical opinions. A friend recommended another physician who offered different guidance. Despite this, my original doctors continued to advocate for the initial treatment plan, which had only worsened my condition.
My diagnostic odyssey had begun. I had consulted one primary care provider and visited two renowned New York City hospitals. Finally, a visit to a third doctor and hospital brought a new treatment approach and intensive testing. This physician prescribed new medications for the pericarditis and addressed the debilitating side effects, such as severe stomach pain from medication-induced ulcers.
Over three months after my initial ER visit, I finally began to improve. By mid-July, the stomach pain had subsided, and my chest pressure and fatigue lessened. I was cleared to gradually resume normal activity.
Today, while significantly better, I still think about the frustration of the diagnostic journey. The multiple visits, the conflicting advice, and the months spent suffering while waiting for appointments highlighted a system that often seemed ill-equipped to handle recurrent pericarditis, especially amidst busy schedules.
I am profoundly grateful to have found a physician who provided effective treatment. This experience has starkly illuminated the paramount importance of health. Recurrent pericarditis, my unexpected teacher, delivered this crucial wisdom prematurely. Now, I embrace gratitude, cherishing life's simple joys, especially time with loved ones. As soon as my health allowed, I proposed to my incredible partner, my unwavering supporter, and she said yes.
The American Heart Association’s Addressing Recurrent Pericarditis patient education is nationally supported by Kiniksa Pharmaceuticals.
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