When I developed an occasional cough 12 years ago, I chalked it up to allergies.
But even after I took allergy medication for months, the cough wouldn’t go away.
Then, I lost weight without trying. I began to wake up sweating at night. I took antibiotics for frequent sinus and chest infections. I was often exhausted.
For decades, I’d managed and loved a hectic journalism career. Now all I could think about was taking a nap in my office, when no one was looking.
I guzzled cold brew to get through the workdays. Then I’d drive home, collapse on the couch and fall asleep. I was in my 60s. What was happening to me, I wondered? Was this what old age felt like?
After three years of puzzling symptoms, I was referred to a Phoenix pulmonologist, who came up with a diagnosis I couldn’t pronounce, much less understand.
I have a chronic lung infection. It’s an environmental disease. It’s not contagious. And it can be deadly.
It’s called non-tuberculous mycobacterial pulmonary disease (NTM lung disease for short) and I soon learned that it’s an emerging global health threat. In the U.S. alone, close to 300,000 people are estimated to have NTM lung disease, and the rate is increasing by about 8% annually among people 65 and older. Experts say it’s difficult to estimate how many younger people have the disease, because they are often misdiagnosed..
In 2024, researchers for the Centers for Disease Control called NTM infections a “substantial public health concern.”
I might have been infected by shower steam, an ice cube, potting soil, house dust, swimming pools, misters, aerators, humidifiers or a haboob.
I’d always thought the word “cure” meant a disease was gone, permanently. That’s not necessarily the case with NTM lung disease.
Even if I were to take a recommended cocktail of three strong antibiotics for two years, or five years, or even longer, the environmental infection might recur or never go away at all. Plus, the antibiotics can produce an array of side effects, including vision or hearing loss.
On that first pulmonologist visit in 2017, I learned I could begin the antibiotic cocktail right away and risk the possible side effects — and might still not get rid of the NTM.
Or I could “watch and wait,” putting off antibiotics until the disease progresses to the point that antibiotics are unavoidable.
I chose to watch and wait. Almost a decade after the diagnosis, I’m still watching and waiting. More on that later.
NTM lung disease frequently presents with an incurable, progressive lung condition called bronchiectasis. It’s pronounced brong-kee-eck-ta-sis and it’s a big word that means the airways are permanently damaged, can’t clean themselves and are vulnerable to infections.
I have that, too.
Feeling I am starting to die, I journaled in 2017, shortly after my diagnosis. Couldn’t sleep. Exhausted. Scared. Can’t think straight. Thought I was over the hump after diagnosis and visit to lung doctor. Now feel confused … Ignorant of disease.
I haven’t had a hot, steamy shower in years.
Not because I’m dirty or weird, but because I live in a state teeming with bacteria that wants to eat holes in my lungs.
The possibility of breathing in more bacteria, or a different, more destructive one, prompts me to take extra steps to reduce exposure to NTM that’s wafted into the Arizona air from soil and water. I try to be discreet with these precautionary measures, but I’m sure my behavior can seem bizarre.
I dodge misters in restaurant patios, hold my breath when washing dishes, boil my drinking water, wear a mask while gardening or dusting or mingling in a crowd, and blast air purifiers in my bedroom, writing room and kitchen.
I have no idea whether any of this is helping me.
These exposure precautions are neither recommended nor condemned by my doctor, who says there just isn’t enough research to prove such efforts are effective. Still, I do it because it makes me feel better and at least I’m doing something to protect myself.
But there is one thing I do that doctors recommend that has probably prolonged my life. I practice good daily lung hygiene. If I don’t clean out lungs, the bronchiectasis will likely progress and become even more welcoming to NTM infections.
I won’t get into too much detail, but just know that lung hygiene is as gross as it sounds.
It takes me hours each day to clean out my lungs. I sanitize my equipment before each breathing session, a process that involves soaking the nebulizer cup along with my Aerobika, which is a device that helps dislodge mucus, in several solutions: sudsy dishwater (15 minutes), white vinegar and water (15 minutes) and boiling water (15 minutes). Once the equipment dries in a sterilized dish towel, I store it in covered Tupperware to keep it clean.
When I’m ready to start a breathing session, I scrub my hands like a surgeon before an operation. I assemble the sterile equipment and attach it to a nebulizer. First I inhale nebulized albuterol, which opens up my airways. This takes about 30 minutes. Then I inhale a nebulized 7% saline solution to break up the mucus clogging the tiniest airways, a process often interrupted by coughing up gunk into a clear plastic cup, all of which can take another 35 minutes to an hour.
Oddly, I don’t mind it at all. I listen to podcasts or books on Audible, write, play with the dog, read the latest news on my phone or veg out watching Netflix. It’s part of my routine, and I feel out of sorts if I miss a session.
For those of us with NTM lung disease, the stuff we cough up every day lets us know how our lungs are faring. An uptick in quantity tells me I need to clean out my lungs again that day. The color tells me if I am dehydrated, or if I have an infection, or if I just need to be more diligent in my lung hygiene.
At night, I clean my lungs one last time without machines. The process is called “autogenic drainage,” and I learned it one night several years ago after I coughed up blood. I couldn’t reach my doctor because the portal system was down. I was terrified, and I didn’t want to go to an emergency room where I might get misdiagnosed. So, I turned to Facebook.
One Facebook page is made up entirely of people like me living with lung ailments. These people have taught me more about the tricks of lung hygiene than any respiratory therapist.
Every single thing I do to keep as healthy as possible is tied to an ongoing quest to understand an environmental lung disease that’s a growing health menace in America, and particularly Arizona, and has long been ignored by most in the medical profession, pharmaceutical industry and journalism.
For nine years, I’ve interviewed those few scientists, doctors, researchers and health policy advocates who do focus on NTM lung disease. I’ve pored over every journal article I could find, joined online support groups, found the best medical care available and have reached out to others who are fighting the same battle, especially in Arizona.
I learned early on that NTM lung disease, unlike its distant bacterial cousins – tuberculosis and leprosy – can’t be caught from other people. Yet it has a social stigma. It can be a messy and embarrassing disease and those of us who have it often feel judged for being exhausted, for coughing, for going to extremes to avoid further exposure.
Our numbers are growing because anyone can pick up NTM lung disease from the environment, although it’s more prevalent in warmer climates and among those with damaged lungs or immune systems.
One marker of the global spread of the disease is the robust sale of antibiotics. The NTM antibiotics market in seven countries alone – Japan, France, Germany, Italy, Spain, the U.K and the U.S. – is expected to soar from $2 billion in 2023 to $4.6 billion in 2033, the analytics and data firm GlobalData reported in June 2025. The U.S. is the biggest consumer of NTM antibiotics in this seven-nation group.
Many of us who have NTM lung disease and bronchiectasis worry about whether insurance companies will pay for life saving drugs when we need them. Most of those drugs are “off label,” meaning they are not approved by the Food and Drug Administration to treat NTM infections.
Charles Daley is the chief of the division of mycobacterial and respiratory infections at National Jewish Health in Denver. He’s also my doctor. Sometimes, he says, insurance companies flat out refuse to pay for off-label drugs used to treat NTM infections.
“It's just an outright denial from insurance. And we go through appeal processes that can take weeks to months, but sometimes we still cannot get it.”
Daley adds, “And when we can’t get it, we have to go to a lesser regimen … And so they're going to have probably less treatment response.”
There are more stressors beyond insurance worries in the NTM lung disease community. Amid reports of the gutting of federal health research, higher insurance premiums, tariffs on medicines and uncertainty over the availability of vaccines, anxiety is building.
It helps me a lot to belong to a community of folks who battle NTM in their lungs. Together, we live with and manage a disease that few doctors understand. We share tips on everything from coping with symptoms to dealing with the high cost of medicines.
“This is an expensive disease, and it worries me greatly,” says Sally Viator, 74, a former educator who waits tables part time and has lived in Phoenix for decades.
Viator is one of a group of Arizona women with NTM lung disease who help me get through the tough days. I met some via online support groups, others have been friends for years or, like Viator, connections I’ve made through mutual friends. Viator, especially, gives me hope. She’s battled the malady since 1991.
And she focuses on living. Viator loves being outdoors, traveling and dancing to country-western music. To stay alive, she’s endured several rounds of antibiotic cocktails and side effects.
“You don’t feel good,” she recalls. “Your stomach is upset. You don’t want to do it. It’s not fun.”
Her doctor took her off the last round of antibiotics a few years ago after it started causing kidney failure. She still has NTM in her lungs and now relies on anti-inflammatory inhalers, one antibiotic and routine lung cleanings with a nebulizer and an electric airway clearance vest. Even so, several times a year flares send her to the emergency room or urgent care. These are uncharacteristically dark moments for her.
“When I get those flare ups,” Viator says, “I always think, `Well this is it, I’m going to die.’”
Arizona has long been associated with lung diseases in ways that are both good and bad.
A century ago, the state’s climate drew thousands of tuberculosis sufferers who hoped that dry air and sunshine would cure them. Locals derided them as “lungers.” But they kept coming. So many sought a cure here that the population boomed, a factor that contributed to Arizona achieving statehood in 1912.
Soon, a whole industry had emerged to accommodate TB patients. Medical personnel. Sanitariums. Researchers. The industry thrived until antibiotics targeting TB were developed in the mid-20th century.
For a long time, Arizona marketed itself as a healthy place to live for those with other lung ailments, like asthma or chronic obstructive pulmonary disease (COPD). That’s changed, in part because growth and climate change have impacted the air quality.
Now Arizona is a place where your lungs can get worse. Although the vast majority of people who live in or visit Arizona don’t get lung infections, some do. In fact, the state has a whole new population of lung patients who got sick right here.
Coccidioidomycosis, or Valley fever, shares some symptoms with NTM lung disease, like coughs and fevers. But NTM lung disease is contracted by inhaling air contaminated by a microbe that drifts up from dirt and water, while Valley fever is contracted by inhaling airborne spores from a fungus that grows in the soil. The two maladies require different treatment protocols.
The state has averaged about 11,600 new cases of Valley fever in the last five years. Cases are very likely undercounted, says John Galgiani, director of the Valley Fever Center for Excellence at the University of Arizona College of Medicine, Tucson.
Arizona’s Valley fever registry is accurate to the extent that people get tested for Valley fever, Galgiani says. Problem is, a lot of cases are uncounted either because some people who have Valley fever don’t seek medical care or because doctors don’t order the lab test that provides a diagnosis.
And while Valley fever is undercounted in Arizona, NTM lung disease isn’t counted at all by state health authorities.
That’s a problem, since epidemiologists looking at insurance records and other data have repeatedly found that Arizona has more people living with NTM lung disease than most other states.
It’s due in part to demographics. Twenty percent of residents in my home state are over 65. Along with genetics, immune disorders and other health factors, an increasingly hot, dusty climate may be another reason for the uptick. NTM love the heat, and they live in dust, among other places.
In the last decade, two studies flagged Arizona as a hot spot. In one, a team of federal epidemiologists and researchers estimated that Arizona had the fifth highest number of cases of NTM lung disease in the nation.
Today, based on epidemiological projections, thousands of Arizonans likely live with it.
And there are only a handful of overworked doctors in the state who know how to treat it.
Alex Perry, a Tucson infectious disease doctor and clinical associate professor at the University of Arizona College of Medicine, says some patients even consider self-treating by taking the animal dewormer ivermectin or inhaling diluted bleach.
“I’m like, ‘No, no, there is no such thing as a safe form of that in lungs,’” he says.
Perry says he gets referrals to treat NTM lung disease patients from all over Arizona.
The sheer number of patients seeking his help clued him into “this whole population of people that were to a certain extent suffering, but more importantly, like, had this diagnosis but really didn’t know what it meant, and really didn’t have anybody to really talk to,” he says. “It’s going to be one of those things where eventually, I think, people are going to realize it’s more and more of a problem.”
In 2020, six years after I first developed symptoms and three years after I was diagnosed in Arizona, I checked myself into National Jewish Health, a medical and research center in Denver.
I chose the clinic because it is one of the few facilities in the west that specializes in treating patients with rare lung diseases. I wanted the best medical care available, and I didn’t think I was getting it in Arizona.
The center started out in the late 19th century as a sanitarium that delivered free care to indigent TB patients, regardless of religion. But unlike the shuttered 19th century tuberculosis sanitariums in Arizona, National Jewish Health evolved into an institution that’s internationally known for its research and treatment of pulmonary diseases.
During my first four-day visit to the center, technicians tested my lungs, my eyesight, my hearing, my blood, my physical fitness, my species of NTM, the quantity of it in my lungs and the antibiotics it’s susceptible to, should I have to take them.
The species of bacteria in my lungs is a member of the Mycobacterium avium complex, or “MAC,” the most common group of NTMs in the U.S. The good news is that after prolonged antibiotic treatment, MAC has been curable in 70 to 80% of cases. The bad news is the recurrence rate after antibiotic treatment can be as high as 50%.
I met Lynne Hebert Remson, a speech and language pathologist who has lived in Arizona for 34 years, via a Facebook group. We meet occasionally for coffee, or talk on the phone, just to check in on each other. She took the antibiotic cocktail for 17 months. She’s been free of NTM for 11 years. She doesn’t want to repeat the misery, so she takes extraordinary precautions to prevent an NTM lung disease recurrence.
In addition to the precautions I take, she sets her water heater to a scaldingly hot 140 degrees, in hopes of killing NTM colonizing her water pipes. She sterilizes her breathing equipment after every use - sometimes twice a day. She bought a medical-grade bacterial shower filter that she uses not only to avoid breathing possible NTM released in shower steam, but for washing fruits and vegetables so she won’t eat NTM and possibly aspirate it.
I was diagnosed with NTM lung disease six years after Remson. We both were infected with the same NTM bug. We also both have bronchiectasis. But our diseases have taken us on completely different paths, with completely different treatment protocols.
My doctor at National Jewish Health, Charles Daley, puts it this way: “There’s really a huge amount of variability from patient to patient, and how much they progress over time. Some very little. Some very fast.”
Daley has been studying and treating tuberculosis and NTM lung disease for decades. On my first visit and every subsequent six-month visit I’ve regularly made to NJH, Daley has ordered extensive testing to see if my lungs have remained stable.
Stable for me is not a return to the near-perfect health I enjoyed before I became symptomatic in 2014. When I was finally diagnosed three years later, the middle lobe of my right lung had already permanently collapsed into a pancake of scar tissue. Lab tests indicated I had massive amounts of NTM in my lungs.
During my visits to Denver, Daley tests my understanding of the fight I’m in as carefully as he tests my lungs. I cannot slip into denial.
Fern Leitman’s lungs were infected by a difficult-to-cure species of NTM and took antibiotics for close to 20 years, until they caused her kidneys to fail. Dialysis wasn’t successful, and she died in Florida in 2014 at the age of 68.
Fern’s stepdaughter, Amy Leitman, now runs NTM Info and Research, the Florida-based nonprofit that her stepmom and father set up to advocate for and educate people with NTM lung disease.
“Sometimes it can take years for someone to get a proper diagnosis,” Leitman says. “Like, they’ll go to their doctors and say ‘I just don’t feel good at all.’ And the doctor will say, ‘Well you look fine.’”
“You know, this is an infection. It sucks a lot out of you,” she says.
“But it’s very hard to understand if you haven’t lived it or lived with it, right?” she adds.
Leitman’s nonprofit hosts an annual patient conference and distributes detailed pamphlets all over the world. It’s got a website loaded with helpful and reliable information. Just as important for me, it offers a series of online support groups made up of and led entirely by people who have what I have.
Recently, I logged onto the support group for Spanish speakers. People from Europe, Central America, Puerto Rico, France and the U.S. signed on, including Lupe Reyes, who lives in Chicago. I was struck by her struggle as a Spanish speaker to manage a complicated, sometimes fatal environmental lung disease.
She immigrated to the U.S. in 1970, planning to learn English and return to Mexico to find a better job there. Instead, she married a Vietnam vet and settled in Chicago. She feels certain she damaged her lungs inhaling dusty fibers without a mask during the 20 years she was a seamstress at a garment factory in Chicago.
Doctors diagnosed her with allergies and prescribed cough syrup. It didn’t work. She surrendered her two beloved cats to a shelter. She moved into another apartment. Nothing helped.
After a series of lung bleeds and emergency room visits, she says she was diagnosed with bronchiectasis and NTM lung disease in 2022. Part of the upper lobe of her right lung was surgically removed because the NTM bacteria were eating holes, called cavities, right through it.
She’s been taking an antibiotic cocktail for years, she says, and it's damaged her liver.
Reyes isn’t proficient in English, and only understood about half of what her doctors said. She recorded her medical visits on her phone and ran the recordings through Google Translate. Sometimes, her adult sons helped her decipher the recordings.
She felt she was battling a disease and no one else understood or had, and it depressed her. But since she joined the support group, she knows she’s not alone, she says. She now feels emotionally supported in her fight to get better.
Support groups are just one tool for staying alive. Some of us, like Reyes, must take medicine to keep the microbes at bay. In addition to the antibiotics, she says she’s now taking a drug to combat destructive bronchiectasis inflammation. Although she’s experiencing side effects, she says she feels better. The medicine is new, just out last year.
But for decades, most pharmaceutical companies hadn’t come up with new drugs that would help us with our fight. That’s starting to change.
Insmed, a global biopharmaceutical company headquartered in New Jersey, is among a handful of pharmaceutical companies that have taken notice of the burgeoning incidence rates of NTM lung disease and bronchiectasis.
Insmed came out with a drug that reduces dangerous lung inflammation associated with bronchiectasis last year. It’s called Brinsupri, and it’s the one Lupe Reyes takes.
Several years ago, Insmed introduced an inhaled antibiotic approved by the FDA only for people who’d failed to kill NTM with the usual antibiotic cocktails. So far, this is the only antibiotic the FDA has approved to treat NTM lung disease.
A handful of researchers, though, are looking into how available medicines affect patients.
I catch up with Kevin Winthrop over Zoom just as he’s finished teaching a class at Oregon Health and Science University in Portland. Winthrop is an infectious disease epidemiologist and doctor who focuses on bronchiectasis and chronic lung infections, including NTM lung disease. His research matters to me because it is often targeted to my concerns as a patient.
“Mycobacterium have been living with humans for thousands and thousands of years,” he tells me. “So, there’s a lot to think about in terms of how to make the relationship more favorable to humans.”
Winthrop and his colleagues were among the first to research the prevalence and increase in NTM lung disease in the U.S., which helped me understand that I wasn’t alone.
Much of Winthrop’s research is supported by federal funding. And in the wake of the Trump administration cutbacks on health research, he says he hasn’t lost any support.
Still, new government policies have taken a toll. Winthrop has lost international fellows because they couldn’t get visas. And he says his colleagues have lost funding for overseas tuberculosis projects.
Since tuberculosis is a distant cousin of NTM, some researchers who’ve had their TB grants canceled say they are switching to NTM research in the U.S., Winthrop says.
“So maybe it’s going to help NTM,” he adds.
The need for diagnosis and treatment of NTM lung disease among underserved communities is “tremendous” says Tim Aksamit, a pulmonary critical care physician at Mayo Clinic in Rochester.
Aksamit is the medical director of the Bronchiectasis and NTM Association. It’s a group of doctors, scientists and advocates who aim to advance care, research, education and support for people who live in my world. Daley is the chief research officer for the association.
Because there’s scant nationwide reporting of NTM lung disease, researchers sometimes get their data from the Bronchiectasis and NTM Research Registry. It contains medical data on close to 9,000 patients. Many of these folks have the money and the time to seek care at medical research institutions, like National Jewish Health, that participate in the registry.
Thousands of others are not included because they don’t seek medical care from participating research institutions. Or they’re too busy with work and kids and life to go to a doctor for a chronic cough. Or they get misdiagnosed. Or they don’t have medical insurance that pays for a visit to a specialist.
Shoshana Zha, a pulmonologist, assistant clinical medical professor and co-founder of the Bronchiectasis and Pulmonary NTM Program at the University of California San Francisco says there are health inequities in all diseases, but “it’s much more pronounced in this disease, because it’s already underdiagnosed.”
“Historically it was believed that bronchiectasis and NTM were mostly diseases of Caucasians,” she says.
But in the last decade doctors have learned that’s not the case.
There are sectors, including some rural, urban and economically disadvantaged communities, where “we just don’t have data,” Aksamit says.
In hopes of reaching more people, the Bronchiectasis and NTM Association is creating a large network of specialized care centers throughout the U.S. The centers will collaborate with research institutions and expand treatment of patients, including those underserved communities. So far, there are 58 centers in the network. There are two centers in Arizona, housed at Dignity Health Norton Thoracic Institute and Mayo Clinic, both in the Phoenix metro area.
As specialized treatment centers become available and new medicines are being developed, there’s hope. In the meantime, I’ll continue living in a way that feels perfectly normal to me, even though it’s not.
Recently, I received the news I’ve been dreading. My CT scan indicates my NTM infection may have gotten worse. I might have to take those antibiotics after all, and deal with the possible side effects.
If that happens, I’m ready.
ABOUT THIS PROJECT
Wendy Selene Pérez is a two-time recipient of Mexico's National Journalism Prize and a Pulitzer Center grantee. She specializes in translation from English to Spanish for major media outlets including ProPublica.
