Cara Caplinger's Journey: Finding Strength in the Face of GPA
Cara is a vibrant 52-year-old woman living in Crawfordsville, Indiana. Her life has revolved around her roles as a mother to her 22-year-old daughter, Cayden, a wife to her husband, John, an elementary school teacher, an avid gardener and reader, and a devoted admirer of Frank Lloyd Wright’s architecture.
Little did Cara know that in May 2023, a seemingly harmless ear infection would mark the beginning of an unexpected and challenging journey with granulomatosis with polyangiitis (GPA, formerly Wegener’s).
As she thinks back, it was exactly two years ago this Mother’s Day that her symptoms started, a harmless ear infection, or so she thought. The persistent ear infection was resistant to antibiotics, and within a month, both her eardrums had ruptured, leading to significant hearing loss, which forced her to take a leave from teaching. While ear tube surgery offered some relief, a relentless fatigue and unexplained weight loss began to take hold. Attributing these changes to simply turning 50, Cara initially brushed them off.
Searching for Answers
By September 2023, a persistent fever emerged. Another course of antibiotics proved futile and alarming bloodwork prompted her nurse practitioner to send her to Indiana University Health in Lafayette with concerns of cancer due to elevated platelet levels. After four days of extensive testing, cancer was ruled out, leaving Cara and her medical team – a nephrologist, cardiologist, oncologist, ENT, and later a gastroenterologist – without answers.
Her oncologist, Dr. Nibal Saad, then suggested the possibility of an autoimmune disorder. Meanwhile, debilitating joint pain set in, eventually confining Cara to her bed. Having a mother with systemic lupus, Cara strongly suspected a similar autoimmune condition and urged Dr. Saad to refer her to a rheumatologist. Instead, he insisted on a nephrologist consultation.
Several weeks later, constant nausea prevented Cara from returning to work. A Tuesday morning appointment with the nephrologist led to a life-altering phone call the next day: Cara’s kidneys were failing, and the underlying cause needed immediate investigation at Franciscan Health Lafayette for which she felt grateful to be transferred to.
Finally, a Diagnosis
After 10 days of thorough examination, including ANCA testing and a kidney biopsy, Cara finally received a diagnosis: GPA. “Dr. Hassan Ahmad was my rheumatologist after diagnosis and he specialized in vasculitis,” Cara added. “He was amazing.” Cara also credits Dr. Saad because he was the first doctor who believed her condition was autoimmune related and sent her to the nephrologist.
Cara felt relieved at having an explanation for her suffering. “In hindsight, I thought I would just take treatment and ‘get over it,” she said.
Having never heard of vasculitis, and with even some hospital staff misnaming her condition, Cara maintained positivity on the outside while grappling with the gravity of the situation inside. “I kept a bright attitude, but inside I was reeling.”
The Hardest Days
Her 10-day hospital stay included a bone marrow biopsy, a rare heart attack, and the initiation of dialysis. Facing the critical state of her kidneys, Cara chose Cytoxan as her primary treatment, alongside TAVNEOS and prednisone. The impact on her life was profound. She missed seven months of work, struggled with mobility, and spent a significant portion of her days sleeping.
The side effects of treatment were harsh: hair loss, unusual rashes, the dreaded “chemo belly,” and shedding skin on her legs, not to mention the characteristic “moon face” often experienced by vasculitis patients. The prednisone brought on depression and heightened anxiety.
Finding Community
Ten days after her diagnosis, Cara found hope with the Vasculitis Foundation (VF). The support group she joined became her lifeline. Additionally, two thoughtful friends began reaching out regularly, offering encouragement and a sense of connection.
“I’m not proud to say it, but I honestly believed that if God didn’t wake me up in the morning, it would be okay with me. I had hit my rock bottom.” Yet, amidst the darkness, she found a mantra: “This is a marathon, not a sprint,” she said. “I kept pushing on, sometimes hour by hour.
Seeking help, she started medication for anxiety and depression, began counseling, and gradually adjusted her expectations. Eventually, she returned to work, initially part time and later full time.
The impact of GPA remains a part of Cara’s life. She now lives with lifelong chronic kidney disease, though she no longer requires dialysis. She experiences reduced sensation in her right foot, significant hearing loss in her left ear, and some in her right. Fatigue and occasional dizziness are still part of her reality, requiring her to carefully plan her activities and sometimes decline invitations. A year ago, she transitioned to rituximab, and her disease is currently in remission.
Strength, Faith, and Resilience
The VF support group remains a vital part of her life, a place to both receive and offer encouragement. “My life is better because of them (the support group).” Throughout her journey, Cara’s faith in God, which had wavered, has been rekindled. She marvels at the unwavering presence she has felt throughout what she considers as her “misadventure.”
“When I read others’ stories, I am reminded of how resilient we are, and that we are superheroes with invisible powers,” Cara said. “Our powers are determination, grit, and gratitude. The world really has no idea how strong we really are.”
Cara has found strength in the face of adversity, the importance of community, and the enduring power of hope