Patients & CaregiversReal Life Stories
Matt’s story of recurrent pericarditis (RP) is one of an unexpected illness with no advance warning, no known cause and what we now know as a diagnostic odyssey that included receiving the wrong diagnosis, and delays in getting care.
Matt’s story of recurrent pericarditis (RP) is one of an unexpected illness with no advance warning, no known cause and what we now know as a diagnostic odyssey that included receiving the wrong diagnosis, and delays in getting care. Matt led an active lifestyle until 2022, the year his life would unknowingly be changed by pericarditis. Matt was always busy, biting off more than he could chew. The year was jam-packed as he navigated his new leadership role at a tech company, studying for his MBA, and leading an active social life.
Matt first encountered an RP flare in November 2022. When his first flare came on, Matt was completely unfamiliar with the symptoms. He felt moderate chest pain, shortness of breath, fatigue, and chills. Matt had never experienced chest pain like this before, which was unsettling. His primary care doctor diagnosed him with acid reflux. This conclusion didn’t add up for Matt, but at this point in time, he had never heard of pericarditis, and had no sense of how a heart-involved condition could feel. Over a week’s time the symptoms faded away. He moved forward into 2023 passing this off as an odd bout of acid reflux.
Fast forward to the first week of April, 2023, when some classic viral symptoms started: face pressure, fatigue, and some minor sinus symptoms. He thought this was a common cold. In a matter of days, his viral symptoms went away, leaving him well enough to attend a meet-and-greet dinner with other NYU MBAs. Unbeknownst to Matt, his life would quite literally change overnight.
After getting into bed that evening, he experienced severe chest pressure, fever and shortness of breath. Recognizing that the similar chest pressure in November had gone away itself, Matt braved the pain in hopes that it would subside. His symptoms worsened as the days progressed, and Matt ultimately deemed it necessary to visit urgent care. The clinic performed an EKG that showed evidence of pericarditis. The doctor told him that there was a small chance it could be something more, with the worst-case scenario being a heart attack. While unlikely, this is not something that anyone wants to hear. A cardiologist would need to evaluate Matt in order to make a definitive diagnosis. Unfortunately, no referrable cardiologists were available for an appointment until days later. Matt hesitantly went home and followed his doctor’s orders to wait on the appointment.
While waiting for his appointment, Matt’s symptoms worsened dramatically. He was experiencing levels of pain he had never felt before. Every movement created excruciating chest pain. It became clear that waiting even one more day to see a cardiologist was not an option. Matt made the decision to take his first trip to the ER where pericarditis was confirmed. After a full evaluation, the ER attempted to discharge Matt. When standing up to leave, Matt’s blood pressure plunged, the room started spinning, and his hearing fizzled as he fell back onto the hospital bed. After multiple failed attempts to stand, the night shift doctor determined Matt was not well enough to head home, and that he needed to be admitted to the hospital for more testing.
A fuller workup showed dramatic levels of inflammation, many times the normal range, that one of Matt’s lungs was half filled with fluid, and that there was excess fluid around his heart (pericardial space). Early into his hospital admission a resident ran a mini echocardiogram and for the first time, Matt was shown a live picture of his heart. The resident let him know that it looked like his heart was ‘losing the battle’ against the liquid around the heart, a claim that moments later had Matt’s family traveling to NYC to support him.
Many hours later Matt made it to the official echocardiogram imaging which indicated that there wasn’t enough liquid around the heart to justify surgery. Instead, armed with medication Matt was sent home and advised to visit his cardiologist a couple of weeks later for another heart scan.
Once home Matt began to again experience symptoms including a low-grade fever, chest pressure, shortness of breath, dizziness, and of course anxiety. Now very worried and very sick, Matt began to search for additional medical advice. Through friends he learned of another physician who offered different guidance; despite this new guidance his original physicians continued to recommend the initial course of treatment, the course that had not made Matt any better, only worse.
The diagnostic odyssey had begun. Matt recounts having seen one primary care provider and two of New York’s top hospitals. Finally, a visit to doctor and hospital number three offered a new course of treatment along with intensive testing. Doctor number three was able to prescribe new medications for the pericarditis and to address side effects from some of the original medications – such as intense stomach pain from medication-induced ulcerations.
Three-plus months after his initial ER visit, things finally began to improve. By mid-July, Matt’s stomach pain had fully subsided, and his chest pressure and fatigue was lightening up. He was cleared to start getting his heart rate up again and start ramping back into a normal lifestyle again.
Today Matt is much improved, but his story is still unfolding. While his symptoms are under control, today he lives with the pain and frustration of the diagnostic odyssey. The pain and frustration of multiple visits to multiple health care facilities and providers – many of whom did not seem to understand how best to treat recurrent pericarditis compounded by busy schedules – appointments that were being made months in advance, months that Matt suffered.
Matt reflects on how fortunate he is that he found a physician – a physician able to put him on a course of treatment that worked. Through his journey, Matt has stumbled upon the difficult truth that health is the ultimate currency – a realization that hit him like a well-timed, unexpected package. Recurrent pericarditis became his surprise teacher, delivering wisdom earlier than expected. Now, Matt embraces gratitude, cherishing life’s tiny treasures, most especially time with his loved ones. The moment he was well enough, he proposed to the love of his life, his #1 supporter. She said yes!