What You Need to Know
In August 2019, Angie Abad went to the emergency room to be treated for a respiratory infection. The medical workers there tested her and prescribed medication, but Abad “never really felt right after that.”
After a second respiratory infection and growing breathing problems, her local hospital still couldn’t pinpoint the problem. Finally, a more specialized hospital nearby performed other respiratory and lung tests and diagnosed her with COPD lung disease.
But the diagnosis and subsequent treatments – including supplemental oxygen, a nebulizer, and an inhaler – have always left Abad, who is 50 years old and lives in Denver, unanswered to growing questions. She felt even worse about her condition because she had seen her father die of the same disease eight years ago.
“I didn’t know what questions to ask my pulmonologist,” says Abad. “I just took the meds she put me on and stopped. No one told me what to expect, the possible side effects of medication or [other] things that I would experience.
She also didn’t find much more support from friends. “When you tell people about your COPD diagnosis, they say, ‘Oh,’ she says. “There is not enough awareness. People do not understand the daily struggles of this disease. “
Not an instant death penalty
David Mannino, MD, pulmonologist in Lexington, KY, and medical director and co-founder of the COPD Foundation, agrees that too many people with lung disease remain in the dark after diagnosis.
Besides the fact that people don’t know what questions to ask: “One of the challenges we always seem to have is that a lot of people think this is some kind of death sentence. This is not the case, ”he says. Mannino has been treating some COPD patients for 15 to 20 years.
Another factor is that people with COPD may not know they can ask for – and deserve – support. “A lot of people go into it with shame and blame,” Mannino says. For example, smokers may respond to their diagnosis by realizing that their habit has helped set the stage for contracting the disease. But the guilt must end there.
“You’re dealing with something that’s incredibly addicting,” Mannino says. “And that’s not the case by accident,” he says, referring to the tobacco companies’ long-standing knowledge of the substance’s harms. While you can trace the cause of COPD back to your lifestyle, now is the time to be gentle with yourself.
A search for assistance and answers
Abad filled the many gaps in his understanding of his condition “through research, the COPD groups and personal experience.”
Her journey revealed many points that she believes are critical for people with lung disease to cover with their doctor, answers she wished she had throughout. They understand:
- What symptoms you can expect to have
- How many stages the disease has
- What stage you are in now
- How long you could live
- Types of breathing exercises
- If you’ll be on the drugs forever
A special question for her was whether altitude makes COPD worse. She just moved to Denver, which is 1 mile above sea level. Higher altitude can penalize your breathing, especially at first.
Mannino says he often hears people with moderate to severe COPD say that they wished they had gone to a pulmonary rehabilitation center or other educational program years ago. In these programs, people learn sooner rather than later how, for example, to stretch and breathe properly. They are also taught to ward off panic attacks and times when they cannot catch their breath with methods like pursed-lip breathing. It is a technique in which you breathe in through your nose and exhale through puckered lips.
Some exercises can actually be fun, Mannino notes, like playing the harmonica. Higher scores provide ideal breathing workouts.
These programs also teach people with lung disease how to use medications and lung devices correctly. “Patients learn too late that different respiratory medications require different techniques to use them correctly,” Mannino explains. “Even doctors may not know how to use them correctly.”
However, “the number of rehabilitation programs for COPD is far too low,” especially in rural areas, he says. The COVID-19 pandemic and its limitations on people coming together for anything “non-essential” has made accessing these programs even more difficult. Doctors also expect that some people who have had COVID will need pulmonary rehabilitation, which will put more strain on the system.
There is an app for it
However, technology has made it easier for anyone to access disease assistance. A number of lung disease management applications have emerged, including a free application from the COPD Foundation called the COPD Pocket Consultant Guide. It is designed for people with the disease and their families. You can download it from the foundation’s website or from Google Play.
The app includes links for the right way to use medications, easy ways to track your schedules, and other helpful tools that rehab programs cover. “You can even print [info] sheets to give to the doctor “for asking helpful questions and starting discussions that can sharpen your knowledge about your condition,” Mannino says.
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