Living With Asthma: A Doctor’s Humbling Journey as a Chronic Disease Patient
Key takeaways:
Chronic asthma is a lifelong disease.
For Dr. Lisa Castaneda, an internal medicine physician by training, it was a challenge to find the right diagnosis and support.
She says it’s humbling to experience medicine from the patient’s perspective.
From the time she was little, Lisa Castaneda suffered asthma symptoms like wheezing, coughing, and shortness of breath. But it wasn’t until she was in college that she was diagnosed with asthma.
And it wasn’t until she had finished medical school and started working as an internal medicine physician that she learned firsthand how serious chronic asthma can be — and how tricky it can be for people to get the right diagnosis and support.
Five years ago, Lisa moved from Seattle, where she had gone to school, to the Upper Midwest. She worked in rural hospitals in North Dakota and South Dakota. The cold air, higher altitude, and worse air quality in the Dakotas — as well as all the germs her three kids dragged home from school — caused her asthma to flare up. What had been a manageable condition became a serious disease that landed her in the hospital and upended her life.
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“I had more symptoms, more cough, more shortness of breath. It was severe enough that I wasn’t able to work, wasn’t really able to take care of the kids,” she says. One employer even let her go because of the disruption caused by her asthma.
What happens when your primary care doctor is stumped
As a doctor, Lisa was familiar with the usual approaches to treating asthma. But when her asthma became more serious, she discovered that her doctors were unsure of how to help. She was referred to a pulmonologist but found the wait time to get an appointment shockingly long.
Thanks to a shortage of asthma specialists in her region and a backlog of cases related to COVID-19, it would have been 3 to 4 months before she could see a specialist who could help her better control her asthma. Unable to care for her family in the meantime, she decided that that was too long to wait. She reached out to the Asthma and Allergy Foundation of America (AAFA) and was directed to a referral center in Denver that works with patients with severe asthma.
Going out of state for healthcare would be impossible for many people but, by this time, Lisa was working for the Veterans Health Administration and was lucky to have nationwide insurance coverage. Her schedule as a doctor, which had her working 7 days and then off 7 days, also made traveling for care more practical. Thanks to these privileges, Lisa was able to make the trip out of state.
“It was difficult being away from family, and then there’s costs with flights and hotels. But it can be very helpful,” Lisa says of her trip to the Denver clinic. “It was really nice to be able to go somewhere where you can get a multidisciplinary, holistic look at what’s going on and get answers quickly. But I know that I was really lucky because a lot of patients don’t have that access.”
Through her trip to the clinic, Lisa discovered that acid reflux was contributing to her symptoms and decided to have surgery to tighten the leaky valve between her stomach and esophagus. That surgery, combined with adjustments to her medications — currently, an inhaled steroid, a bronchodilator, and a nebulizer medication — are now keeping her asthma symptoms manageable, she reports. But flare-ups still sometimes keep her from working and send her to the hospital.
Lessons learned on a humbling journey
Lisa calls her experience on the other side of the examination table “humbling.”
“Even though I’m a doctor, and I could spout out the symptoms and the differential diagnosis and medications, it's different from actually experiencing the illness,” she says. “I've gone to emergency departments, and they say, ‘Oh, this is just anxiety’ or ‘This can’t be asthma.’”
She’s realized that, as a patient, it can be difficult to feel heard.
She also experienced the complexities of the American healthcare system when she tried to get her insurance company to authorize a new, innovative medication.
“I had to get the paperwork in. And then I would call and they would say, ‘Oh, it can take 30 to 60 days for the authorization to be approved.’ It’s just amazing how difficult it can be and all the hoops that patients have to jump through. And a lot of times, there isn’t someone to advocate for them,” she says.
Her journey has been challenging, but it also taught her a few valuable lessons about navigating the healthcare system and dealing with an often misunderstood chronic condition.
First, seek support: “When you have a chronic illness, it can be really isolating, and you feel like you’re the only person dealing with it. Finding a support group was number one for me. I didn’t feel like I was alone and had someone to bounce ideas off of and pick me up on the bad days,” she says of the community she connected with through the AAFA.
Lisa also stresses getting a second opinion: “People will stay with their primary care doctor, or with a pulmonologist that they’ve been with for a long time. And sometimes it can be helpful to get a second opinion or to consider asking for that referral to a specialist that deals with asthma, just because a lot of medications are changing,” she says.
Doctors should have up-to-date knowledge, but they should also listen to you, she says. And you should hold up your side of the bargain by being honest with your doctor. People “sometimes really want to be the good patient and to say, ‘Things are great,’ even when they’re not. It’s good to have that open communication,” Lisa says.
Finally, she says, it’s important to accept that chronic asthma is a lifelong issue that requires lifelong care: “One of the things I told myself is, ‘Think of asthma like diabetes.’ You have to take your medications every day for good control, and then to be able to monitor your symptoms both subjectively and objectively,” Lisa says.
She says it’s important to develop an action plan with your doctor, so that you know how to adjust your medications when your symptoms change.
Asthma is not just a childhood illness
Lisa’s perhaps most important lesson is that asthma doesn’t always look like people think it does.
Some people think of asthma as a childhood illness, but that’s a myth: “It is something that can affect people into adulthood. There are forms of asthma that start in middle age,” Lisa says.
Another myth is that all asthma is easily treated. “Asthma can be debilitating,” she says.
If you’re among those struggling to control your asthma well past middle school, Lisa advises seeking out support from those who understand chronic asthma, so you can get the help you need to manage your condition long-term.
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