The battle against chronic obstructive pulmonary disease (COPD) is tough. It’s a progressive lung disease, meaning it gets harder and harder to breathe over time, and it’s the third leading cause of death in the United States.
COPD is also an incredibly costly burden for both patients and health care systems, which is why it is one of the diseases targeted by the Hospital Readmissions Reduction Program (HRRP), an effort built into the Affordable Care Act to cut down on excessive readmissions. Part of reducing those numbers is about the care patients receive in the hospital, of course, but the rest of those outcomes stem from how they care for their own health outside the walls of a health facility.
That’s where the Better Breathers Club comes in. Better Breathers is supported by the American Lung Association with monthly meetings led by trained facilitators. They encourage in-person support among adults, making sure COPD sufferers have all the tools they need to have the best quality of life possible.
One such club at Tidelands Waccamaw Community Hospital has already seen great success thanks to one of its members, Bill White. A retired mortgage banker, White was relatively young when he received his diagnosis, and he took great strength from the support his Better Breathers network provided.
“I wouldn’t be here without the group,” White said. The disease still takes its toll – White has been in a coma before, and was recently back in the hospital with a collapsed lung – but he credits the shared information and support from Better Breathers for giving him the quality of life he has today.
“Group members just tend to be more active in their own health care,” says Deborah Collins, co-facilitator of the group. It was Collins, a nurse at Tidelands Waccamaw, and her colleague Patricia Stoehr, a respiratory therapist, who encouraged White to become an official Better Breathers facilitator.
"He was very enthusiastic about learning as much as he could and making the most of his life," says Stoehr. “He knows so many people and has so many resources and contacts. He was always suggesting speakers.”
"I've always been a Type-A personality, so I wanted to get more involved," says White, who took to the role with gusto. “The group has given me a lot, and I needed to give back.”
White’s help was quite welcome, too.
"Everybody loves Bill,” says Stoehr. “They like that he's a facilitator who has dealt with some of the same issues they have. He knows what they are going through." She thinks other Better Breathers clubs might benefit from having facilitators like White, who are passionate and who have been through the same struggles as the patients themselves.
White’s wife, Lori, also speaks highly of the Club’s impact on spouses and other family members as well.
“For me and many of the other spouses, family members or caregivers of the patients in the group, it gives [us] comfort and insight about what we go through,” she says. “It’s a place where we can all talk to each other and even help each other through some issues that arise or even to just help each other through, knowing that we’re not alone in what we deal with and the feelings that we may have. That to me is as important as what the group does for the patient.”
As for his leading role in making his branch of Better Breathers what it is, White mostly downplays his contributions a bit, crediting the group with making the most of things. “I just try and keep the speakers fresh and relevant,” he says. He often books experts from across the nation who Skype in to talk at the monthly meetings. There are a range of topics, from breathing techniques and exercise advice to treatment options and medical tests, that are all important to COPD sufferers. His work has led him to become a state captain of the COPD Foundation.
One thing all of the Tidelands facilitators agree on is that more of these groups in South Carolina would be beneficial. There’s little cost involved – the hospital donates the meeting space, and the only cost beyond that is the time of the facilitators. White notes that many of his club’s members have to travel a great distance to attend meetings, as there are less than dozen groups currently active in the state.
While these groups aren’t huge, their impact is apparent to health care workers like Collins.
“There’s a woman in the group who used to arrive in a wheelchair. Now she walks in while carrying her own portable tube,” she points out. "I think we've made a difference.”