Lori Thompson of Hilo got a diagnosis of chronic obstructive pulmonary disease, or COPD.
Her ailment is not well-known, even though it’s the third-leading killer of people in the U.S. — behind heart disease and cancer — according to federal data.
Hilo Medical Center defines COPD as “an umbrella term used to describe progressive lung diseases characterized by increasing breathlessness, including emphysema, chronic bronchitis and asthma.”
“It’s a scary thing to be without breath,” Thompson said Monday after the most recent Hilo Medical Center COPD support group meeting.
When it’s hard to breath easily, Thompson learned, she stands near a table, puts her hands on its surface and leans forward. That seems to ease pressure on her lungs and make it easier for her lungs to take in air.
This and other tips are shared among support group members — what works for one sometimes works for others.
They’re eager to let people with COPD know about the support group, that COPD impacts smokers and nonsmokers, and that carrying supplemental oxygen is often a medical necessity and should be respected.
Thompson was at home — feeling isolated — when she realized there must be others dealing with the same health condition. COPD can cause isolation because it makes getting out and about a struggle.
When she called the hospital to inquire about a support group and was told there wasn’t one, she asked if one could be started.
“Within a month, we had a group,” Thompson said.
When she struggles with breathlessness, she turns to the Bible and God for spiritual support.
“Some days are hard,” she said. “Some days I cannot breath. You’ve just got to sit and stay calm.”
Support group members chatted during their recent meeting about issues they have faced. Some wondered aloud if a particular challenge was unique. Some wanted tips for how to deal with a problem. Others simply appreciated the knowledge that they’re not alone.
Heart disease was discussed as something to get screened for because the symptoms can overlap with those of COPD.
There are stereotypes — people offhandedly will suggest a person’s at fault for causing their own COPD, group members said.
“Well, if you hadn’t smoked all those years …,” some said they were told.
Smoking is a risk factor. But many smokers never get COPD, and people who have never smoked get it.
Some members of the support group remember when they weren’t allowed to take their supplemental oxygen tanks onto jetliners. For those who need supplemental oxygen, this meant skipping air travel altogether.
Support groups, members said, can help bring awareness and even foster change of such policies. And presenters to the group can bring awareness about new research, best practices and resources.
Pulmonary rehabilitation, for example, helps improve quality of life for people with COPD. But there is not a program in Hilo and it’s pretty rare throughout the country because it costs more money than insurance typically pays.
Group members would like to find a way to start a program here. Even something as seemingly simple as taking a shower can be worrisome.
“The humidity in a shower will just take your breath,” Thompson said. “I’ve got to take a bath with my oxygen on.”
She mentioned showers during a support group meeting and got strong reaction from everyone in the room.
“I thought it was only me that was having a hard time taking a shower,” she said.
The COPD support group meets at 4:30 p.m. the third Monday of each month at the Learning Center on the second floor of Hilo Medical Center, 1190 Waianuenue Ave.
For more information about COPD, visit www.copdfoundation.org.
Email Jeff Hansel at jhansel@hawaiitribune-herald.com.