How to Keep Your COPD Under Control, Even When Life Is Changing
For most of us, any change to our normal existence adds a certain layer of distress. But when those moments occur and you’re living with COPD (chronic obstructive pulmonary disease), it can complicate your ability to manage serious symptoms like shortness of breath and wheezing.
In general, life with COPD is stressful, says Grace Anne Dorney Koppel, a COPD patient advocate and president of the Dorney-Koppel Foundation. You’re constantly wondering if you’ll be so breathless you can’t get your next breath, or so congested that you can’t speak. “Anything on top of that diagnosis, whether it be a change in your insurance or a move to another location, is just additive to what’s already there,” she says.
So when those other aspects of your life take a turn toward the pressure-filled, your ability to manage your COPD can be affected. “Stress can decrease quality of life, worsening lung function, as well as enhance forgetfulness and poor adherence to medication,” says Reynold A. Panettieri, M.D., science director at the Rutgers Institute for Translational Medicine and Science, in New Brunswick, New Jersey.
Meet the Experts: Grace Anne Dorney Koppel, a COPD patient advocate and president of the Dorney-Koppel Foundation; Jimmy Johannes, M.D., a pulmonologist and critical-care medicine specialist at MemorialCare Long Beach Medical Center in Long Beach, California; John Linnell, a volunteer captain for the COPD Foundation; Rachael Morkunas, program director at Respiratory Health Association; Reynold A. Panettieri, M.D., vice chancellor for translational medicine and science director at the Rutgers Institute for Translational Medicine and Science, in New Brunswick, New Jersey.
It would be great, of course, if you could keep any such shake-ups from happening, but because change is a part of life, it’s important to be prepared for the inevitable curveballs that may affect your COPD management. Here are some of the most common changes that experts say can be problematic for COPD patients, along with some suggested ways to navigate them.
You started a new job.
When you report to your first day of work, there is inherent stress—you’re meeting new people, getting up to speed on protocols, and trying to navigate an entirely new setting. That’s a lot for anyone to juggle, let alone someone managing COPD.
Discussing your diagnosis is a personal decision, but experts point out that it can be helpful to tell your human-resources manager (if your job has one) and your boss about your condition. “It’s wise to discuss that up front,” Dorney Koppel says, noting that the Americans with Disabilities Act protects you from discrimination in the workplace and gives you the right to certain accommodations, if you need them. “Reasonable accommodations may include accessible parking, flexible schedules, smoke-free environments, and advance notice of construction,” says Rachael Morkunas, program director at Respiratory Health Association. All of this can help you manage your COPD in the workplace more easily.
John Linnell, a volunteer captain for the COPD Foundation, says he didn’t disclose his COPD diagnosis “until it got to the point where I was starting to fail at work because of it.” This is why he recommends being transparent about your COPD, especially if you’ll need to use oxygen at work, saying something along the lines of: Here is my condition, but I can still produce and work. “Then, do what you can,” he says.
Beyond that, Linnell stresses the importance of continuing with your prescribed treatment plan. “It is incredibly important that somebody living with COPD take their maintenance medications every day,” he says. Otherwise you risk getting sick on top of everything else you’re dealing with.
You’re moving to another area.
Relocating to a new place usually means you’ll need to find a new doctor. It’s worth asking your current provider if they can recommend a pulmonologist where you’ll be living, says Jimmy Johannes, M.D., a pulmonologist and critical-care medicine specialist at MemorialCare Long Beach Medical Center in Long Beach, California—they may have a connection from medical school, or simply know someone great where you’re moving.
If your doctor doesn’t have a connection, however, Linnell suggests asking online support groups for help. “When I moved, I found people on social-media groups that I’m in and said, ‘Who do you recommend?’” he says. “I heard the same name over and over—and I wound up with that doctor.”
Dr. Johannes stresses that looking for a new provider in advance is best, versus trying to find one after you’ve arrived. “Reaching out ahead of time is a good idea,” he says, noting that you can book an appointment ahead for after your arrival, to get a head start on inevitably long wait times.
At the same time, Dorney Koppel recommends having a COPD action plan in place that details next steps to take if you start having certain symptoms. “You want to be able to put at the top of the list the things that are going to help you,” she says. She also recommends continuing to take your regularly prescribed medications and building in periods of rest and self-care. She stresses the importance of continuing to exercise during this time, too, to keep your lung function up.
“You’ve got to think about yourself,” Dorney Koppel says. “Reach out to family and friends for help with your move, and be clear that this is a hard time for you.”
Your health insurance changed.
A switch in insurance can come with changes in coverage—and that can throw your treatment plan out of whack. “What you’re taking now might not be covered, or covered as well, especially if you take expensive medications that require prior authorization,” Dr. Johannes says. (In case you’re not familiar with the term, prior authorization is a process through which health-insurance companies determine if they’ll cover a medication or service.) “Whenever there’s a change in insurance, it needs to be applied for again,” he adds. Some insurance providers will also require that you try certain other medications before using the one you prefer, even if you’ve already been taking it for years, he says.
Dorney Koppel recommends contacting your new insurance company about your medications and talking to your doctor, so you can be fully informed about coverage. “Have a doctor who will work with you, so you’re able to get a plan in which the most important medicines for you are covered,” she says. If you know certain medications you rely on won’t be covered, she recommends contacting your doctor in advance to see if anything can be done to ensure you have the medications you need while you come up with a new care plan.
In some situations, your current doctor may not be covered under your new policy. If this is the case and you know ahead of time, Dr. Johannes recommends contacting your new insurance provider to see who will be covered under your plan. Then, ask your doctor or go on message boards to see if people in your support groups can recommend someone in your new health network.
Also, remember that not all changes in health coverage are bad. “Inquire if the new insurance covers programs to help manage COPD, such as pulmonary rehabilitation, by calling the company’s help line,” Morkunas suggests. Linnell says he has had a good experience with an insurance change: “I switched and now almost all of my medications are free. I get free doctor’s visits, too.”
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