By Ashley M. Casey
Staff Writer
In 2014, Bev and Doug Wernet of Liverpool both battled lung infections. Bev got better — Doug did not.
“I just couldn’t get through a day,” he said.
At first, Doug’s doctors chalked up his shortness of breath and fatigue to age, weight and the lingering effects of surgeries he had undergone. But Doug felt something more serious was causing his symptoms.
Finally, a doctor told him, “You have something beyond my qualifications. You need to see a pulmonologist.”
The Wernets consulted Syracuse pulmonologist Dr. Michael Flintrop, and a CT scan showed scarring in Doug’s lungs. The diagnosis was idiopathic pulmonary fibrosis, a disease in which lung tissue scars, stiffens and thickens, making it more difficult to move oxygen through the body. “Idiopathic” means there is no known cause.
Two years after Doug’s diagnosis, the Wernets started a support group for others with pulmonary fibrosis. Breathe Easy Syracuse meets every other month at St. Joseph’s Outpatient Program in Liverpool.
“It’s very gratifying knowing you can help others as best you can,” Bev said.
Now, the Wernets are taking their cause even more public by raising money for the Pulmonary Fibrosis Foundation through the Make Every Breath Count Walkathon. The 5K walk will take place Sept. 9 at Onondaga Lake Park. (See sidebar for details.)
A life altered
“It is extremely difficult to diagnose. It masks itself,” said Doug, who relies on an oxygen tank and takes several medications to manage his symptoms. “A trained person can listen to my lungs and say there’s nothing wrong.”
“A lot of people don’t understand the disease,” Bev said. “I was in nursing, and I’d never even heard of it.”
The life expectancy for pulmonary fibrosis patients is three to five years after their diagnosis. The disease is progressive and there is no cure, but some patients are eligible for lung transplants. Doug compared the decline to going down a staircase — “and you don’t come back up.”
Faced with this life-altering diagnosis, Bev and Doug’s active schedule of golfing, entertaining their friends at their lakeside home and volunteering with Meals on Wheels and their church, the Cathedral of the Immaculate Conception, had to slow down. But the Wernets saw a chance to reach out to others with IPF.
“We were doing a lot of volunteer work, and we’ve had to cut back, which makes us feel bad because we like helping people,” Bev said.
Bev contacted the Pulmonary Fibrosis Foundation, which is based in Chicago, and learned how to start a support group. PFF does not officially charter support groups, but it offers information, training and listings of local support groups on its website.
Attendance at Breathe Easy meetings hovers around 10 to 12 people: patients, caregivers and those who have lost loved ones to the disease. One member who lost her husband, Doug said, has started her own group specifically for widows and widowers.
“The stories that you share — you find out, ‘Oh, I’m going through that too,’” Bev said.
In addition to offering people a safe place to share their stories, Breathe Easy allows patients to swap treatment tips and hosts speakers on topics such as nutrition, medication and hospice care.
“The conversations I’ve had with some of the people involved in it are very helpful,” Doug said.
For families who are affected by pulmonary fibrosis, the Wernets stressed the importance of talking frankly about the future.
“I was very grateful that my parents planned their funerals,” Doug said, recalling that his parents picked out cemetery plots, caskets and even what music they wanted to be played long before they passed. “They realized it would be difficult to lose them, so they were trying to make it easier for us.”
While caregivers do not bear the physical burden of the disease, Bev said, they are left to schedule appointments and take on the household tasks that their loved one can no longer do.
“As a caregiver, you have the disease too in a certain respect. You don’t physically have it, but you own it,” she said. “You have to communicate. Don’t be afraid to express your feelings. There’s no right or wrong way to work things out.”
“Make Every Breath Count” is an extension of the Wernets’ mission to help people with pulmonary fibrosis, and Doug is making sure his time counts.
“It’s overwhelming to know you have such a shortened life,” he said. “My goal is to save the world one person at a time.”
Breathe Easy Syracuse meets every other month at St. Joseph’s Outpatient Program, 7246 Janus Park Drive in Liverpool. For more information, contact Bev Wernet at [email protected] or (330) 265-9687.
