Patients & CaregiversReal Life Stories
To celebrate heart month, we are featuring individuals who have struggled with unexpected challenges and come through with flying colors, offering us all hope and sharing lessons in patience, persistence, and gratitude. Today we celebrate Rachel – a recurrent pericarditis survivor who met the challenge with optimism, strength, and perseverance and who continues share her message of hope to help others.
Rachel’s journey began six years ago. A mother of two, a professional, and a recreational athlete (at least 10 triathlons) Rachel awoke with pain in the middle of the night. Thinking this was nothing serious she took an NSAID and the pain went away. However, there were more symptoms – neck pain and her chest hurt. Follow-up testing led to a diagnosis of pericarditis and a treatment regimen of anti-gout medications and NSAIDs along with instructions to stop exercising for three months and guidance not to worry – that pericarditis typically resolves with the help of medications.
Within four days of that diagnosis, Rachel’s health deteriorated dramatically. She was diagnosed with pneumonia in addition to pericarditis and she was in trouble – in severe pain, unable to eat, and could barely walk. 9-1-1 was called and Rachel was transported to the hospital where she underwent pericardial window surgery. While in the hospital, the lining of her lungs filled with fluid, followed by her pericardium again filling with fluid. After discharge from the hospital things got even worse. While most pericarditis patients safely recover with the help medications Rachel’s was a tough case. She experienced five recurrences of pericarditis in three months. The initial treatment simply wasn’t working. Through courage, conviction, and support from loved ones, she embarked on what some call a diagnostic odyssey involving exhausting research, numerous consultations, and trips to multiple health providers to finally find doctors who seemed to be able to treat her complex case. Two years after that first hint that something was wrong –Rachel was finally on her way to recovery.
Today, six years later, Rachel is healed – but not without scars. Pericarditis had a profound emotional impact and changed who she is forever. While the old Rachel was an amazing individual the new Rachel is amazing but now has a more profound understanding of just how precious health is, the fragility of life and compassion for those who face a condition that doesn’t respond to the “usual” treatment. She now knows the enormous energy it takes to be your own advocate, to face the unknown, to suddenly become an “expert” in a disease or a condition that you hadn’t even heard of. Rachel is also drawing on her experience to help others. As a Board member of the Pericarditis Alliance, a nonprofit organization dedicated to pericardial disease, she partners with world renowned pericarditis providers, with patients, and with advocates who are working to provide persons with pericarditis a place to go for information on new and emerging treatments, and a place to go to talk with persons who have lived with pericarditis to share their fears, aspirations, hope and challenges.
Rachel’s story is one of strength and perseverance, tenacity and compassion. A message of hope for all with pericarditis. With thanks to Rachel for sharing her story and continuing to help others to heal and to grow. Cheers to Rachel and crush that next Triathlon!