Finding Support After an NTM Lung Disease Diagnosis: Facing Challenges with a Care Team and Loved Ones
After moving out to Colorado, Beth was living her dream as a successful business professional and nature enthusiast. She spent her free time hiking through the Colorado mountains, playing tennis, running, and serving as a volunteer firefighter in her community. But she soon began to experience a lingering cough and fatigue that impacted both her personal and professional life. (BPT)
While working as a public relations consultant, Beth’s symptoms impacted her day-to-day job that required frequent communication with others. “I couldn’t make a speech or lead a meeting without coughing. I kept thinking it would get better, but it only got worse,” Beth recalls.
At a work event, a nurse heard her coughing and urged her to see a doctor. After experiencing symptoms for a year and being diagnosed with bronchitis and asthma along the way, Beth underwent testing that confirmed she was living with nontuberculous mycobacterial (NTM) lung disease: a serious, progressive, and chronic condition caused by bacteria in the environment.
Learning More About NTM Lung Disease
People can get NTM lung disease when they breathe in the bacteria that can be found in tap water, showerheads, steam from hot tubs, and soil from parks and gardens. While everyone comes into contact with NTM bacteria during their daily lives, most people do not develop NTM lung disease because their lungs are healthy enough to clear the bacteria. However, people with a history of lung conditions, like bronchiectasis, chronic obstructive pulmonary disease (COPD) or asthma may be more likely to develop NTM lung disease because the damage from these conditions can make it easier for NTM bacteria to infect their lungs.
In 2019, it is estimated that 98,000–113,000 patients were diagnosed with NTM lung disease in the U.S., and cases are growing 8 percent each year. Since awareness of NTM lung disease is limited and the symptoms of NTM lung disease, like chronic coughing, feeling tired often and shortness of breath, are similar to other lung conditions, many people who have it may not even know it for months or sometimes years. In fact, at the time of diagnosis, a majority of patients have moderate to severe NTM lung disease.
If you have an existing lung condition and symptoms that won’t go away or are getting worse, it’s important to get tested for NTM lung disease because the condition and symptoms can worsen over time, causing damage to your lungs.
Communicating with a Care Team Is Essential
The sooner you get tested for NTM lung disease and receive a diagnosis, the sooner you can begin to evaluate treatment options with your doctor. Once diagnosed, working with a team of various healthcare professionals who focus on different aspects of your health can help you navigate your treatment journey and integrate new lifestyle changes. Your care team may include a pulmonary and/or infectious disease specialist, pharmacist, respiratory therapist, and psychologist, among others.
Beth engaged different members of her care team as she started treatment and adjusted to her new reality after diagnosis. An important part of her disease management was ongoing conversations with her doctors about her treatment plan and progress. She also appreciated the collaboration between her doctors.
“My doctors encouraged me to keep exercising and eating healthy meals prescribed by the dietician. They also regularly asked about my emotional health and discussed my depression, which had been building for some time,” said Beth.
As her cough started going away, and her energy returned, she felt hopeful.
It’s important to have ongoing discussions with your doctor about your management plan and what may be appropriate for you.
A Support Network Can Help with NTM Lung Disease Management
Beth quickly learned the importance of a support network when she was first diagnosed with NTM lung disease. While waiting in her doctor’s office, she met another NTM lung disease patient who explained that this disease could be managed. Her caring words made all the difference that day, and later on, Beth realized she was so relieved to finally know what was going on with her health.
Since that day, she’s developed a friendship with that patient as well as others that she’s met in support groups. Beth’s partner, Paul, and her family and friends have also provided support for her along the way. She encourages other patients to find support and resources that can help with their own NTM lung disease journeys.
There are several online patient resources available to learn more about NTM lung disease, such as the Voices of NTM Lung Disease eMagazine on AboutNTM.com, which provides information on living with and managing NTM lung disease through first-person stories from different members of the community, like Beth. On AboutNTM.com, you can also access more information on how to join support groups to connect with others who have NTM lung disease, and how to sign up to receive helpful resources.
Sponsored by Insmed Incorporated.