In August 2019, Angie Abad went to the ER to be treated for a respiratory infection. Medical workers there tested her and prescribed meds, but Abad “never really felt right after that.”
After a second respiratory infection and growing problems with breathing, her local hospital still couldn’t put a finger on the problem. Finally, a more specialized hospital nearby ran more breathing and lung tests and diagnosed her with the lung disease COPD.
But the diagnosis and the treatments that followed -- including extra oxygen, a nebulizer, and an inhaler -- still left Abad, who is 50 and lives in Denver, without answers to mounting questions. She felt even worse about her condition because she’d watched her father die of the same disease 8 years before.
“I didn't know any questions to ask my pulmonologist,” Abad says. “I've just taken the meds she’s put me on and left it at that. No one has told me what to expect, possible side effects of meds, or [other] things I would experience.”
She didn’t find much more support from friends, either. “When you tell people about your diagnosis of COPD, they say, ‘Oh,’” she says. “There isn’t enough awareness. People don’t understand the daily struggles of this disease.”
Not an Instant Death Sentence
David Mannino, MD, a pulmonologist in Lexington, KY, and the medical director and co-founder of the COPD Foundation, agrees that too many people with lung disease remain in the dark after diagnosis.
On top of people not knowing what questions to ask, “One of the challenges we always seem to have is, a lot of people think it’s some type of death sentence. It’s not,” he says. Mannino has been treating some COPD patients for 15 to 20 years.
Another factor is people with COPD perhaps not knowing they can seek -- and deserve -- support. “A lot of people go into it with shame and blame,” Mannino says. For example, smokers might react to their diagnosis by realizing their habit helped set the stage to get the disease. But the guilt should stop there.
“You are dealing with something that is incredibly addicting,” Mannino says. “And it’s not that way by accident,” he says, referring to tobacco companies’ longtime knowledge of the harms the substance causes. Even if you can trace the cause of COPD to your lifestyle, this is a time to be gentle on yourself.
A Search for Support and Answers
Abad filled the many gaps in her grasp of her medical condition “through research, COPD groups, and personal experience.”
Her journey has turned up many points she feels are key for people with lung disease to cover with their doctors, answers she wished she’d had all along. They include:
- What symptoms you can expect to have
- How many stages the disease has
- What stage you’re in now
- How long you might live
- Types of breathing exercises
- If you’ll be on the meds forever
A special question for her was if altitude makes COPD worse. She’s newly moved to Denver, which clocks in at 1 mile above sea level. A higher altitude can tax your breathing, mainly at first.
Mannino says he often hears people who have moderate to severe COPD say they wished they’d gone to a pulmonary rehab center or other educational program years before. In these programs, people learn earlier rather than later how to, for example, stretch and breathe properly. They’re also taught to fend off panic attacks and times when they can’t catch their breath with methods like pursed lip breathing. It’s a technique in which you inhale through your nose and breathe out through puckered lips.
Some exercises can actually be fun, Mannino notes, such as playing the harmonica. The higher notes provide ideal breathing workouts.
Such programs also teach people with lung disease how to use meds and lung devices the right way. “Patients learn too late that different respiratory meds require different techniques as to how to use them correctly,” Mannino says. “Even physicians might not know how to use these correctly.”
However, “the number of rehab programs for COPD are far too few,” especially in rural places, he says. The COVID-19 pandemic and its limits on people getting together for anything “nonessential” has made it even harder to get into these programs. Doctors also expect some people who’ve had COVID will need pulmonary rehab, which will put more strain on the system.
There’s an App for It
Technology has made it simple for anyone to access disease support, though. A number of lung disease management apps have sprung up, including a free app through the COPD Foundation called the COPD Pocket Consultant Guide. It’s designed for people with the disease and their families. You can download it from the foundation website or Google Play.
The app includes links for the right way to use meds, easy ways to track your schedules, and other useful tools rehab programs cover. “You can even print out [info] sheets to give the doctor” to prompt helpful questions and start talks that can sharpen your insights into your condition, Mannino says.