After enduring pain in her right side for over a year, Susan decided she needed to consult her healthcare provider. She was initially diagnosed with pleurisy, which is inflammation of the two thin membranes that cover the lungs and line the chest cavity (also known as the pleura). But after several rounds of treatment, it became clear that the problem was more serious and required further testing. Her doctor ordered an X-ray, and the scan revealed Susan had emphysema. “I smoked for many years, so the diagnosis seemed to fit,” Susan recalled. Little did she know this was the beginning of a much longer lung disease journey.
A Cancer Diagnosis Changes Everything
A year after her emphysema diagnosis, Susan found out she also had heart disease. She decided to try pulmonary rehabilitation to help her manage the symptoms of both diseases, and for a while it worked well. “I would get a little short of breath, but nothing major,” she said. Despite good management of her diseases, her doctor suggested a low-dose CT scan because of Susan’s long smoking history. The test, offered for $99 through a local program supported by the American Lung Association and the Radiology Association, turned out to be lifesaving.
“They saw something suspicious on the scan,” she says. “Then I went for a PET scan, and it lit up.” A biopsy confirmed the stage 1A lung cancer diagnosis. Though they caught the cancer early, Susan decided she wanted to be aggressive. She consulted a surgeon and, soon after, surgeons removed the right upper lobe of her lung and several lymph nodes to ensure the cancer hadn’t spread.
The procedure was successful, but it left her with unexpected challenges. “I ended up with a paralyzed right diaphragm from the surgery,” she says. She struggled with other parts of recovery as well, which is what first led her to look for information and support groups online. “I wasn’t finding any groups, any programs or follow-up communication. I felt completely lost.” Her doctor sent her to respiratory specialist and physical therapy where she worked hard to heal.
Becoming Involved with Lung Association Programs
It was through her respiratory therapist that Susan became involved with the American Lung Association smoking cessation program. “I had quit off and on after my heart diagnosis in 2009, but once I was diagnosed with cancer it was a no-brainer. I knew I needed to stop,” she said. She quit that day, but a few months later she got the support she needed to stay away from tobacco when a woman from the Freedom From Smoking® program offered hope. “That phone call was my miracle,” Susan said. “She sent me pages and pages of resources—support groups, contacts, everything I needed. That’s how I got into the Better Breathers Club.”
The Better Breathers Clubs are local support groups that bring together people living with chronic lung diseases like COPD, asthma and pulmonary fibrosis. Through these meetings, Susan received more than just education and tools for living better; she also found the friendship and understanding she yearned for. “I started with the Stillwater group at Lakeview Hospital in Minnesota,” she says. “Our facilitator, Jenny, is amazing. Every month, we learn something new—from palliative care and medication management to hearing from pharmacists and doctors.”
She also joined a second Better Breathers group closer to home, that she attends weekly. “Each group is a little different, but both give me a chance to connect with others who understand my situation,” she says. “You’re with people who have a wide range of problems, but we share our experiences and support each other. It’s made such a difference.”
Spreading a Message of Hope
Her involvement with groups like the Better Breathers club inspired Susan to become more active in her community. Today, she serves as the Wisconsin captain for the COPD Foundation to help raise awareness and push for better patient care. She also continues to work with the Lung Association. This year, she traveled to Washington, D.C. to advocate for the SOAR Act (Supplemental Oxygen Access Reform Act), which aims to make it easier for people with lung diseases to get the oxygen equipment they need. “It was my first time in Washington,” she says. “We met with our representatives, I told my story and they really listened. That meant so much to me.”
The trip was particularly special because her friend, John Linnell, a well-known COPD advocate, passed away shortly after recommending her for the Lung Association’s patient advisory group. “John believed in me,” she says. “He taught me so much about using my story to help others. I hope doing this work honors him.”
Though her journey hasn’t been easy, Susan’s message to anyone newly diagnosed with lung disease or cancer is simple and clear: don’t give up. “Don’t give in to fear,” she says. “Yes, it’s scary. But if you hang in there, you’ll find so many people in your corner. Even if you don’t have family nearby, there are support groups, the Lung Association, the COPD Foundation—there are people who care. You’re not alone.”
She also encouraged anyone who smokes to quit and get screened, as it was a CT-scan that changed everything. “That low-dose CT scan saved my life,” she says. “If you qualify for one, please do it. It’s worth it.”
Blog last updated: January 16, 2026
