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Road to Diagnosis
My journey to nontuberculous mycobacterial (NTM) lung disease diagnosis was extremely long and studded with misdiagnoses. By the time of my diagnosis, I had been suffering from a chronic cough and frequent exhaustion for nearly 15 years. I had seen several different providers who had diagnosed me with borderline asthma, and others who had dismissed the idea of asthma. But when I found a doctor who was more thorough and performed CT scans, my NTM infection was identified, and I was promptly referred to a pulmonary specialist.
It was both a relief and a scare to be diagnosed with NTM. I was glad to finally receive a diagnosis that made sense, but I had never heard of the disease and was uncertain what it would mean for my life. My local pulmonologist did not instill confidence, as he did not have answers to many of my questions. That was disconcerting. Moreover, when I was initially prescribed antibiotics and antihistamines, it took many months to feel improvement in my symptoms.
It was not until I sought treatment at a specialized center, that I felt empowered to live with my disease. The specialists there taught me so much and were able to answer my questions. I was relieved to know what I was dealing with and that I could do something about it. They helped me learn what to expect and how to ease my symptoms.
After my diagnosis, I was on and off medications for 14 years—mostly oral antibiotics and some inhaled medications—before receiving IV antibiotics that improved my condition. Currently, I am able to manage my symptoms with airway clearance devices, including a positive expiratory pressure device, nebulized saline, and a high frequency chest wall oscillation vest (to be clear, using these devices can take hours out of each day!).
I consider myself fortunate to have had access to travel to a specialized center for care. For the first 12 years of my care there, I would travel to see them twice per year. That means I was making airplane and hotel reservations, renting a car, and so on, every time I visited. But each time I saw the specialists there, I felt it was worthwhile. Now, I travel once per year (except in 2020, when I did not travel due to the COVID-19 pandemic). My advice to other patients is to weigh your options and seek the best care possible. I do not think I would be doing as well as I am today without the expert care I received.
NTM During COVID-19
During the COVID-19 pandemic, I had to take extra special precautions. I did not travel to the hospital for CT scans, but I did continue to send sputum samples for monitoring. Although people with NTM must always be cautious about their health, during the COVID-19 pandemic, it seemed like the rest of the world was catching up to us. In speaking with my fellow NTM patients, we have had fewer exacerbations while those around us were wearing masks and slowing the spread of respiratory infections. However, others have been alarmed by our coughing; I have frequently needed to explain that I have a noncontagious chronic lung disease, not COVID-19.
In closure, I would encourage anyone suffering with a chronic condition to not give up your quest for a diagnosis; keep searching and you will eventually find a healthcare professional who is knowledgeable about your condition. For NTM in particular, everyone’s disease is different—find a specialist who will treat your specific disease. In addition, seek out as much information as you can. Speak to other patients, advocates, and know your options. There are clinical trials, support groups, and informative websites. Do not ever give up hope for living your best possible quality of life.
More on NTM: Virtual Symposium
To hear more on NTM, including strategies to reduce time to diagnosis and provide guideline-based, individualized care, join us for an upcoming live virtual symposium. The program will include more insights on the patient experience as well as perspectives from expert faculty, Keira A. Cohen, MD; David E. Griffith, MD; and Princy N. Kumar, MD, FIDSA, MACP.