When her husband was diagnosed with idiopathic pulmonary fibrosis, Karen Carns embraced caregiving, strengthening their bond through the challenges they faced together.
Karen Carns
In her professional life, Karen Carns had two careers that placed her in the role of caregiver. First, she was a medical assistant in an obstetrics clinic, helping expectant mothers, some of whom had little or no support. Then, as an HR manager at a large company, Karen focused on creating the best possible employee experience. However, nothing fully prepared her to become the caregiver for her husband, Jim, when he was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2010. They felt as if Jim had been handed a death sentence.
IPF is one of the most common types of pulmonary fibrosis (PF), a progressive and debilitating lung disease with no cure. Most people have never heard of the disease or its symptoms — such as a dry, persistent cough; fatigue; and shortness of breath — which are often mistaken for other conditions. Because the disease is largely unknown, patients can go months, or even years, without receiving a correct diagnosis.
Karen, who was four years into retirement, felt anxious and scared when Jim was first diagnosed. She was worried about what the future would bring, but she was deeply committed to supporting her husband. Together, they found the Pulmonary Fibrosis Foundation (PFF) and were relieved to discover a wealth of educational resources and a community of support. The PFF’s caregiver guide and website content were invaluable.
A long road
As a caregiver, Karen went to every doctor’s appointment with Jim, taking detailed notes to ensure they both had the same understanding of what was happening. This approach proved to be immensely helpful as the disease progressed. They also joined a few support groups that provided helpful information and a safe outlet to heal emotionally.
Jim’s pulmonologist at the time suggested he consider participating in clinical trials. This appealed to Jim immediately and he enrolled in a trial. Although he understood that it might not help him directly, he hoped that his participation could further the understanding of the disease and potentially benefit others in the future.
In 2013, Jim received a single lung transplant and, as a result, was unable to complete the trial. However, his contribution to research made a difference. Today, the therapeutic pipeline for PF is more robust than ever before. Patient participation in clinical trials continues to be vital in advancing care for others living with the disease.
A few years after the transplant, Jim’s health began to decline. In 2019, after experiencing ongoing damage from the transplanted organ, Jim enrolled in another clinical trial. He was receiving treatment in that study when he received a second lung transplant in 2021, this time on his native lung. While Jim’s condition is currently stable, maintaining his medication regimen and keeping active are challenging, and Karen helps keep him consistent.
A lifelong role
Karen believes that every marriage should have the feeling of caregiving, a mindset of partnership that transcends challenges. The role of caregiver is not a temporary position — it evolves but never goes away. A few years ago, the roles reversed when Karen needed to recover from a medical procedure herself. Jim was ready and willing to help her heal and recuperate.
Caregiving is a mindset — a shared commitment to each other’s well-being. Karen and Jim are fortunate that they both embrace this mindset in their marriage, reinforcing their bond and strengthening their resolve in the face of adversity.
