Wednesday, March 15, 2023
As he swam through the warm, blue waters of the Caribbean near a St. Marten snorkeling boat, Paul Swanson knew he was in trouble.
He couldn’t breathe.
“We’d go snorkeling all the time and I never had a problem – and I was struggling,” the 71-year-old retired human resources professional said about the scary February 2020 incident. “I got on shore, and I was like, ‘Ah, ah, ah,’ trying to catch my breath. When I got home, I scheduled an appointment with a cardiologist, thinking it was my heart.”
Tests showed his heart was fine. However, by August 2020, breathing tests and CAT scans showed fibrosis, a thickening of the tissues in his lungs. With no history of exposure to typical triggers of asbestos, coal dust, molds or an autoimmune disease, Swanson was diagnosed with idiopathic pulmonary fibrosis, or fibrosis without an identifiable cause. The American Lung Association estimates up to 207,000 people are affected by idiopathic pulmonary fibrosis, with nearly 60,000 new cases diagnosed each year. There is no known cure.
Medication stopped Swanson’s lungs from getting worse for about a year. Then, in September 2021, disease progression landed him in an emergency department. And, he contracted RSV in November 2021.
Hospitalized for a month and barely able to breathe, doctors put Swanson on the lung transplant list.
“I had mixed feelings,” he said. Relatively healthy all of his life, Paul had already been shocked by his fibrosis diagnosis and dramatic decline. So although daunting, news he was being listed for a transplant seemed to be more of a chance to recover and live a normal life. “I was mostly glad I had an option. There was no cure, per se, for the disease, and I was in a bad way.”
Most transplant programs require patients to participate in pulmonary rehabilitation to remain listed. Swanson turned to the Beaumont Pulmonary Rehabilitation Program on Coolidge Highway in Royal Oak while he waited for a set of lungs.
“I had to be wheelchaired in,” he said about his first day on Jan. 8, 2022. “It was pretty hard because of the level of oxygen I had to intake.”
Beverly Maurer, manager of Pulmonary Physiology and Rehabilitation at Corewell Health’s Beaumont Health & Wellness Center – Coolidge in Royal Oak, said the program combines physical conditioning and coaching. Respiratory therapists support patients with reinforcement that they should keep moving, despite their breathing difficulties. About 20 new patients join the program each month, with diagnoses ranging from COPD or chemical exposure to autoimmune diseases or, like Swanson, fibrosis.
“We teach them how to get through their everyday tasks and how to breathe through it,” she said. “Most people when they get out of breath sit down and stop – and that’s the worst thing for your body. They lose muscle mass; they lose conditioning. Then, they get to the point where they’re getting up to make a cup of coffee, and they can’t breathe.”
Swanson faithfully drove 40 minutes each way, three days a week for the 10-week program. He then continued with the maintenance program into the summer.
“I started in January, and the big, big improvements started in June,” he said. “In September, when I had updated tests they took me off the transplant list.”
Swanson credits the work he put in – and the support of the respiratory therapists.
“It’s learning the breathing techniques and how to use the different machines,” he said. “There’s encouragement, and they’re not judgmental. They said, ‘We’ve got progress here, but the disease is not something that’s cured. And, to keep it at bay, you have to keep it up. We’ll support you any way we can.’”
Therapists check blood pressure, and ensure patients aren’t breathing too fast or using belly or chest muscles to breathe incorrectly while exercising, Maurer said. She said there’s also strong camaraderie among the patients.
“A lot of these patients are isolated,” she said, estimating the program has about 100 maintenance program participants at the Royal Oak rehab center. “They’re looking for support and they grasp on to each other. Someone is there who understands what they’re going through and is there to support them.”
The program’s medical director, pulmonary and critical care specialist Dr. Enrique Calvo-Ayala, said patients, therapists and staff all work hard at the physical rehabilitation, and also to build strong relationships built on encouragement and support.
“I think that pulmonary rehabilitation is one of the interventions with the most positive impact on the quality of life of people living with chronic lung disease,” Dr. Calvo-Ayala said. “Most, if not all, patients love the program.”
Coming off the transplant list means Swanson can travel again, and he’s looking forward to visiting his daughter and grandchildren in California. Looking back, he said he had noticed some shortness of breath for about a year prior to the fateful cruise. Now, he wants to inspire others to address breathing issues when they start, to hopefully stop any progression of disease. His motto now: “Breathe in: courage…exhale: fear.”
Calling the Royal Oak pulmonary rehab team “Paul’s biggest cheerleaders,” Maurer said seeing patients participate in everyday aspects of life inspires the therapists who help get them there.
“When you’re on an oxygen tank, many people would just sit at home,” she said. “And we have many patients who are getting up, dragging in their oxygen tank and getting on the treadmill, so their quality of life remains. That’s the message: keep moving. No matter what, keep moving.”