Brian and his wife raised three teenagers in a rural community in northern Maine, about 10 minutes from the Canadian border. At 42 years old, Brian was diagnosed with a rare, genetic lung disease called Alpha-1-antitrypsin deficiency (Alpha-1). While shortness of breath and decreased endurance are common symptoms for Alpha-1, he also started to experience new symptoms such as fever and night sweats, which eventually led to him being diagnosed with NTM lung disease. Brian sat down with us to share his journey.
What is NTM lung disease?
Nontuberculous mycobacterial lung disease, or NTM lung disease, is a rare and progressive lung disease caused by bacteria commonly found in soil and water. Everyone inhales NTM into their lungs during their daily activities, but most people never get sick. People living with a chronic lung disease like Alpha-1, COPD, and bronchiectasis, or those who have a weakened immune system or are older adults, are at higher risk of developing a severe lung infection like NTM lung disease. There are treatment options for NTM lung disease, but because the symptoms are similar to other lung diseases it often takes a long time to diagnose. If left untreated, there is a risk of worsening lung infection and lung damage. Learn more at Lung.org/NTM.
Q. What symptoms did you experience before getting diagnosed that led you to talk to your doctor?
I started to experience new symptoms such as recurring fevers, chills, and night sweats. I also noticed in the morning I had more phlegm and chest congestion than before. These symptoms were unlike what I experienced with Alpha-1, which is a rare, genetic type of COPD. While these symptoms were new, I didn’t think it was anything serious enough to talk to my doctor. Part of my management plan for Alpha-1 was regular pulmonary function tests (PFT) to check the disease’s progression and monitor my lung function, which was at 53%. My test results had been relatively stable, so when I saw that my PFT results began to fall below my normal range, I became concerned. It was at that time I knew I had to take the first step and talk to my doctor about my new symptoms and my concerns about my test results.
Q. What type of doctor did you first discuss these symptoms with?
I was already seeing my pulmonary doctor because of my Alpha-1 diagnosis. At first, my pulmonary doctor thought the decline in lung function was related to the progression of Alpha-1 or a sign of aging. However, once I shared more details about the new symptoms I was experiencing like fevers, night sweats, coughing and chest congestion, my doctor became more suspicious that something else may be causing these symptoms.
Since I live in a rural community, pulmonary and infectious disease specialists are not readily available, I had to travel 220 miles each way to see my pulmonary doctor. I had several diagnostic tests and procedures done before I was diagnosed with NTM lung disease. My doctor ordered blood tests to check if my symptoms were caused by an infection or another medical condition. I also had X-rays and CT scans to help determine what is happening in my lungs and check for any changes in my airways. Then, my doctor ordered sputum samples for lab cultures to see if there was bacteria in my lungs or airways. It was not until three years later that I was correctly diagnosed with NTM-MAC lung disease.
Q. What advice would you provide others about talking to their doctor about unresolved respiratory symptoms?
The advice that I would share with others is do not be afraid to speak up about changes to your health. If you experience new or worsening symptoms, these signs may be clues about what is happening in your body and you should discuss them with your doctor. You also want to learn as much as you can about your lung disease and do your own research.
What is NTM-MAC lung disease?
Mycobacterium avium complex (MAC) is the most common type of NTM bacteria in the United States. Like other NTM lung diseases, MAC is not contagious. Once properly diagnosed, individuals with MAC lung disease can be treated with a combination of antibiotics taken over an extended period of time.
Most importantly, advocate for yourself. Remember, your health should be your number one priority. Before each doctor’s appointment, prepare a list of questions and concerns you would like your doctor to address. If you feel your concerns are not being addressed by your doctor continue to ask questions or do not be afraid to get a second opinion.”
Learn more about NTM lung disease at Lung.org/NTM.
Blog last updated: August 21, 2023
