September 26, 2018
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Breathing Treatments

Pulmonary fibrosis cure remains elusive, yet education is important
Steve and Marsha Oeth are grateful for summer together at their Elberfeld, Ind., home.

Steve Oeth was making excuses. He was 20 to 30 pounds overweight, he told himself. He wasn’t used to exerting himself, he’d say. Other days, he’d insist that he was just plain tired. Then Steve heard a question that he wasn’t prepared to answer: “What’s wrong with you?”

While Steve had been ignoring his shortness of breath, others hadn’t. They had noticed that after walking to the front of the church, it took him a good 10-15 minutes to rest before he could give his sermon. So when one female member of his congregation asked him, bluntly, why he was having so much trouble, Steve didn’t quite know what to say. But it was the nudge that finally got him to the doctor.

That was in 2010. Within days, the Elberfeld, Ind., resident would be diagnosed with pulmonary fibrosis, a relatively unknown condition in which the lungs are scarred, making breathing more and more difficult. The average life expectancy of someone diagnosed with pulmonary fibrosis is three or four years, without a lung transplant. The cause can be genetic, environmental, or unknown, according to Pulmonary Fibrosis Partners Inc., based in Newburgh, Ind.

Roughly 15 percent of those diagnosed with pulmonary fibrosis have a genetic tie to the disease. Examples of environmental causes may be exposure to heat, smoke, chemicals, and even some types of medical treatments. The majority of cases are idiopathic — there is no known cause.

Steve is in that last category. He’s also one of the fortunate few who have received a lung transplant, the only therapy shown to prolong the lifespan of those diagnosed with pulmonary fibrosis. Only about 25 percent of patients diagnosed with the condition are eligible for a lung transplant. And even if a patient is eligible for a transplant, oftentimes a donor match cannot be found before a patient may succumb to the disease.

Additionally, according to Steve’s wife, Marsha, “some people wait too long and their body starts deteriorating and they are not able to make it through the transplant.”

Steve, however, was one of the lucky ones — though there were problems with his operation. It is largely because of his lung transplant that Steve now has a lung capacity of 47 percent. While not as good as it could be, his lung capacity is enough to allow him to play with his grandchildren, and to go to work. It’s also a vast improvement over where he was a year ago at this time.

“I was lugging an oxygen tank around and I had it turned up pretty well to the maximum to be able to do just about anything,” he says, remembering what it was like before his transplant. “To get in the car and go somewhere, I had to have an oxygen tank. I had to have enough supply to be able to get through the day. I don’t have to do that anymore.”

It took two surgeries in October 2012 performed at Barnes-Jewish Hospital in St. Louis before his double lung transplant was complete. Doctors then discovered that Steve’s diaphragm had been nicked during the operation, causing major complications. For two and one-half months, Steve was placed on a ventilator and a feeding tube. Finally, he learned to breathe using his shoulder muscles. With therapy, he was able to walk more and more. 

These days, Steve takes a breathing test every day to test his lung capacity, and if the readings are declining, it could be a sign his body is rejecting the lungs. He will be on anti-suppressant medication for the rest of his life, and he must be wary of getting the flu, as his immune system is more fragile than others who have not had a lung transplant. Steve also is prohibited from swimming in natural water because bacteria in the water may damage his new lungs. He is advised against eating raw fish and raw meats, as well, Marsha says.

He also knows that he is fortunate to have a second chance. That’s what Mike and Christa Shore, who live around Darmstadt, Ind., say, too.

“We are just grateful for every day,” Christa says. It’s her thankful response now that Mike is doing very well after two lung transplants, the second of which was successful. A former high school vocational teacher, Mike was 45 years old and very active when he first began feeling short of breath. He also experienced flu-like symptoms. He was placed on a trial drug before he had his first lung transplant in January 2009. Within five days of the transplant, however, his body began rejecting his new lungs.

“They had put him on the lung transplant list again,” Christa says. “In August 2010, he had his second lung transplant, and after that, his lungs have been perfect. His energy and endurance are back. I mean, you would never know he had a lung transplant.”

It’s a dramatic improvement from where they were just seven years ago, when Christa was Mike’s primary caregiver. At the time, she was working full time while going to school.

“There were times when I was struggling with not knowing if Mike was going to live or die,” she says. “There are so many fears, and a lot of doctor’s visits, and a lot of medical care that you don’t feel qualified to do but you have to do it. The emotional burden was just nearly unbearable, and that’s true for most caregivers.”

Additionally, not much was known about pulmonary fibrosis when Mike was diagnosed, Christa says. She says Pulmonary Fibrosis Partners has done a lot to make people aware of the condition. Christa and Mike also started a support group at St. Mary’s Medical Center, too, that meets every three months.

“We have had up to 60 people, which really shocked us that there were that many people that are struggling through pulmonary fibrosis,” Christa says. “Mike was never a smoker and, as far as we can tell, he wasn’t around a biohazard. We don’t know what causes it. We have doctors come in from Louisville, from Indiana University, from Barnes Jewish Hospital in St. Louis, and from Vanderbilt University Medical Center in Nashville. They will come and tell us about their program, about lung transplants, about trials that are going on for pulmonary fibrosis. All that was born out of Pulmonary Fibrosis Partners. They are the ones who got all of us connected. And they are the ones who brought awareness to our area.”

Meanwhile, Mike continues to be healthy. Christa says it has been three years since his second lung transplant, and that he has had no signs of rejection or infection. While he hasn’t returned to teaching high school, he has begun preaching at Beyond the Veil Fellowship, a church he and Christa planted several years ago.

“Things are working out real well,” Christa says. “He’s kind of out of the woods. The doctor said his lungs are perfect.”

For Roc Roney, the ties to pulmonary fibrosis are more tenuous. He suspects his family is genetically predisposed to the disease, but the genetic link has not been proven and has yet to be determined. He doesn’t have pulmonary fibrosis, but it’s likely his grandmother had the condition. His uncle was diagnosed with pulmonary fibrosis sometime in the mid-1970s. Roc’s mother also was diagnosed with pulmonary fibrosis. She died within months of her diagnosis in 1987. Five years ago, one of his cousins was diagnosed with the disease as well. That cousin had a double lung transplant but died within 30 days of the surgery. Another of Roc’s cousins also was diagnosed with pulmonary fibrosis less than a year ago.

“It’s just something that hangs over your head,” he says of every dry cough he hears, knowing that cough could indicate pulmonary fibrosis in that family member. He adds that his cousins live knowing about the disease, and that it’s important for people to be aware that it is a possible cause of a lingering cough or a growing, persistent shortness of breath.

“You are chronically aware of it, and now with my cousin, we are acutely aware of it and looking for a cure,” Roc says.

Shirley Becker is Roc’s mother-in-law. She also is the founder of Pulmonary Fibrosis Partners, which strives to make people aware of the condition and to educate the public about its symptoms. There are also two other organizations dedicated to pulmonary fibrosis. The Pulmonary Fibrosis Foundation, based in Chicago, is primarily a research organization, Becker says, while the Coalition for Pulmonary Fibrosis, in California, specializes in patient advocacy.

The Pulmonary Fibrosis Foundation is currently creating and raising money for a national registry of pulmonary fibrosis patients. Others can help pulmonary fibrosis patients by agreeing to donate their organs on their driver’s licenses.

“You never get to choose exactly what happens in life,” Steve Oeth says. “The choice you get to make is how you are going to react to what happens in life. The best you’ll ever learn is to make the most of it. Always have hope, and don’t give up.”

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