The Invisible Burden: Understanding the Full Impact of Recurrent Pericarditis
6 Sep 2023 • 5 minute read
Rachel Freeburg, a resilient woman from Salem, Oregon, shares her story of battling the physical, mental, and financial hurdles of recurrent pericarditis for seven years: “I couldn’t even laugh because I was so exhausted; it rips you apart.”
A loving wife and mother of two adult children, now in her early 50’s, Rachel has always led an active lifestyle; whether she was lacing up her running shoes for a half marathon, going for a swim, training for a triathlon, or hitting the slopes for a day of skiing, her boundless energy and love for physical activity were evident. With a master’s degree in social work, she has spent the past decade working as a licensed clinical social worker, offering support and compassion to children and families in need. However, the emergence of recurrent pericarditis has challenged her in ways she could never have anticipated. By sharing her story, Rachel hopes to shed light on the realities of living with recurrent pericarditis and encourage further research and understanding of this complex condition.
In the summer of 2016, at the tail-end of a stressful residency in social work to achieve her clinical license, Rachel’s condition first made its presence known when she was struck by a numbing pain coursing down her right arm. In her life, both on a professional and personal level, she was going through a transitional phase, on the verge of commencing a new career while her children were on the brink of completing high school and college. As a vibrant and active woman, she initially brushed off the numbing sensation as a temporary discomfort and continued with her normal activities, such as going on runs. Shortly after, she developed a persistent pain in her neck and chest which gradually got worse over the following two weeks. Rachel believed the pain was due to her new job and her body adjusting to an unfamiliar sitting position. After a month of perplexing discomfort, Rachel spoke with her physical therapist and was directed to visit a doctor due to her pain level, “At this point I had a neck brace on because it hurt so badly.” After an electrocardiogram (ECG) Rachel received a diagnosis of pericarditis through her primary care physician and was directed to take colchicine and ibuprofen (a non-steroidal anti-inflammatory drug). At the guidance of her doctor, she was instructed to avoid running for at least 3 months so that her heart rate did not go above 100 beats-per-minute. The doctor assured her that her condition was nothing to worry about, except for a risk of low blood pressure.
Pericarditis is a medical condition characterized by inflammation of the pericardium, the thin double-layered fibrous sac that surrounds and protects the heart. The pericardium normally protects the heart and helps it function properly, but when it becomes inflamed, it can cause chest pain, fever, and other symptoms. It can be caused by a number of factors, including autoimmune disorders, viral infections, or trauma, and can be treated with anti-inflammatory medications, steroids, and other therapies. Recurrent pericarditis is characterized by repeated episodes of this inflammation of the pericardium. Recurrent pericarditis can occur weeks, months, or even years after the first episode and can be more severe than the initial episode. Both the initial episode and recurrences can be treated with anti-inflammatory medications, steroids, and other therapies.
After three days on the prescribed medication, Rachel’s symptoms did not resolve, and she went to the emergency department for further testing. It was uncovered that in addition to pericarditis she also had pneumonia. With her overall health continuing to decline steadily day by day, Rachel was hesitant to acknowledge the severity of her symptoms until she was forced to come to terms with them, “I didn’t fully realize how bad of shape I was in because just a week before I had taken a five-mile run, but now I couldn’t even walk from the living room to the kitchen.”
As several days passed, Rachel noticed a distinct grey pallor in her complexion. Recognizing the possibility that her severe symptoms could be caused by low blood pressure, her husband, Steve, promptly dialed 9-1-1 for immediate assistance. When the emergency medical technicians arrived, she was given intravenous fluid and transported to the emergency department. Rachel was given another ECG and an echocardiogram that revealed cardiac tamponade – a medical condition characterized by the accumulation of fluid or blood in the pericardial sac, the membrane surrounding the heart. This condition leads to decreased cardiac output and shock, which can be life-threatening if left untreated. The next morning Rachel had pericardial window surgery, which is a procedure performed to provide a pathway for accumulated fluid or blood within the pericardial sac to drain out into the surrounding tissues or a cavity, allowing the pressure on the heart to be relieved. While at the local hospital, Rachel struggled with repeated fluid build-up in her lungs and heart, and she had frequent consultations with an infectious disease doctor and repeated testing in an attempt to diagnose the underlying cause of the fluid buildups. “No one could figure out what was happening. I had an infectious disease doctor come in and evaluate me every morning and everyone was in hazmat suits because they thought I had something terrible, and this was something they had not seen before.” Rachel was eventually given prednisone (a corticosteroid) during her week at the hospital, and to her surprise it helped, and she was discharged.
Unfortunately, over a period of approximately 6 months, Rachel had four to five additional episodes similar to her initial pericarditis episode and was feeling extremely unwell. Some flare ups occurred when her doctors attempted to taper prednisone. Eventually, Steve convinced her to go to the hospital again, this time to Oregon Health & Science University (OHSU), the best hospital in the state. Rachel found it challenging to accept this reality, as she believed her active and health-conscious lifestyle did not warrant her admission to the hospital. At OHSU Rachel received care from a cardiologist who was familiar with pericarditis, and he worked with Rachel over the following year to effectively wean her off prednisone, although she still did not receive a diagnosis of recurrent pericarditis.
Over the next few years Rachel continued to have repeated flare ups and was not nearly at her peak physical capacity. Each episode lasted roughly 4 – 6 weeks with symptoms including exhaustion, pain, shortness of breath, and excessive sweating. Rachel and her family continued to do their research and, as guided by her doctors, Rachel tried different treatments in addition to prednisone, including colchicine and non-steroidal anti-inflammatory drugs. Eventually the tapering of prednisone was successful, but the unpredictable nature of her condition still left Rachel grappling with even the simplest of tasks, “Over the next few years, it was imperceptible that I was getting better. When I got up in the morning, I had to double the amount of time I needed because I could not move very fast. I went on a wine tasting event with friends and I couldn’t even laugh because I was so exhausted; it rips you apart.”
With her recurrences continuing, yet remaining undiagnosed as recurrent pericarditis, in 2018 Rachel’s doctor recommended she start taking prednisone again, which she sharply declined. Rachel and her family hesitated to commit her to resuming long-term corticosteroid treatment, considering Rachel’s previous firsthand experience with its side effects. Determined to pursue the cause of her illness and find a path towards healing, Rachel went to the Cleveland Clinic in Ohio to visit a world-renowned cardiologist specializing in pericardial diseases. It was during this pivotal visit that Rachel was finally given the diagnosis of her condition: recurrent pericarditis. Even though she could finally define her condition, Rachel felt sad knowing the journey was going to be long, “I wanted to be hopeful that everything was going to go away, but I thought, ‘I’m going to have to run a marathon here; this is not a sprint, this is not a blip, this is a chronic illness.’” Her cardiologist and rheumatologist recommended that Rachel go on a daily injectable biologic medication; however, there was some back and forth with her other doctors who did not believe that this was the right medication for her. With the knowledge she and her family had attained doing their own research, plus the recommendation of a world expert in pericarditis, Rachel decided to go on the medication and pay out of pocket. This helped transition her life out of an arduous cycle of different medications to a consistent treatment regimen that provided stable relief. Rachel went from feeling her worst to feeling like she was getting her life back, “It helped immediately and although I didn’t get all the way better, I definitely could tell this was helping. It was magical.”
Amid battling the physical and mental toll of recurrent pericarditis, Rachel appealed twice to her insurance agency to get coverage for the medication, which was not covered. After paying out of pocket $4,500 a month for several months, Rachel was determined to secure the financial support she deserved and needed, and she embarked upon building a compelling case for her insurance company. Advocating for her own health, Rachel, along with her very supportive mother and stepfather, meticulously gathered medical records, consulted with healthcare professionals, and assembled her medical narrative and timeline, as well as peer-reviewed scientific articles and submitted everything to the regulatory oversight board. Finally, after over a year of persistence, Rachel’s efforts paid off and she received a letter acknowledging that her insurance company would cover her medication going forward and also reimburse her for the medication expenses she had incurred, “It was justice. It was amazing. I still remember where I was and getting the vindication that all my convictions about this were correct. It was nice to see the system work.” This hard-won victory not only provided financial relief, but also served as a testament to the power of advocacy and resilience in navigating the challenges of the indirect burden of recurrent pericarditis.
Today, Rachel is still on her prescribed medication and maintains a modified physical activity schedule, running three times a week, but not participating in marathons and triathlons. Although she still experiences flares, she feels 80-90% better than when she was at her worst. Rachel wishes that her journey to get the necessary and effective medication was easier and faster. This would have perhaps decreased the lasting negative effects on her physical, mental, and emotional health, as well as that of her whole family.
As Rachel’s recurrent pericarditis journey enters its eighth year, her unwavering spirit and unyielding fight serves as a beacon of hope for those facing chronic illnesses. She stresses the importance of avoiding self-blame and maintaining a positive mindset, “This is an unpredictable illness and people need to know that this is not something that’s their fault.” Rachel acknowledges this is a life altering experience for patients, their families, and everyone within their circle, but stresses the importance of remaining hopeful, “Give yourself a long time to heal because the clouds are going to part and you’re going to get your footing again. Even though life might be different, you will be able to keep going and you will get there with time.” While her path has been marked by moments of uncertainty, pain, and unanswered questions, Rachel’s story is a testament to the strength of the human spirit and the importance of fostering understanding, support, and resilience in the pursuit of a brighter future not only for oneself, but for all who endure a similar burden.
The Pericarditis Alliance is a nonprofit organization dedicated to the diagnosis, management, and treatment of pericardial disease through research, education, and support for patients and healthcare providers.