This article was written by Bret Denning, JD.
Diane L. Gregg is an individual living with NTM lung disease. She is a retired clinical social worker who spent her career working in various health care settings where she worked as a clinician and Director of Social Work and Human Services. Diane is currently working to complete a certificate program to become a mindfulness meditation teacher. She lives in the Chicago area with her two kitties and enjoys being a grandmother.
Thank you for talking with us today, Diane. Can you tell us more about your initial NTM lung disease symptoms?
I was diagnosed with NTM lung disease in early 2014. I began having symptoms a few months earlier. Initially I just felt extremely fatigued. I can't emphasize that enough. I had a hard time even making it home from work without falling asleep. This was very unusual for me because I'm a high energy person.
About six weeks after the fatigue started, I began coughing. It was an intermittent cough. I didn’t think too much about it until my friends and family began remarking, "Oh, you’ve been coughing a lot and it’s a really deep cough." Hearing that from them, and also getting pneumonia a few months later, made me decide to follow up with my doctor.
What tests did the doctors do to diagnose your NTM lung disease?
The first test the pulmonologist ordered was a chest X-ray. That test confirmed that I had pneumonia. I was told that the air sacs in my lungs were enlarged in what they called a “tree in bud” pattern, which indicated NTM lung disease.
I put off having a bronchoscopy for about six months because I had had a bad experience with a bronchoscopy many years before in another city. It just was scary to me. But I finally had a bronchoscopy, and that confirmed my diagnosis of NTM lung disease.
Were you told that you were at high risk for NTM lung disease?
At the same time, I was also diagnosed with bronchiectasis. Because of that, it’s hard for me to cough up sputum and clear my airways. Bronchiectasis is a chronic condition that increases a person’s risk of developing NTM lung disease.
Over the course of my life I had more than my share of lung issues. I had Legionnaires’ disease when I was 32 years old. I also got a series of atypical pneumonias. So when I was finally diagnosed with NTM lung disease, the doctor said I had probably had bronchiectasis for many years.
The doctor said that the more we left my NTM lung disease untreated, the more it would damage my lungs. Getting the diagnosis helped me make sense of what was going on in my body and the things I could do to help my body.
Exercise, healthy eating, and taking medicine
Thank you. Let’s talk about how you manage your NTM lung disease. What types of medications are you taking?
My doctor prescribed multiple antibiotics and a pharmacist gave me some excellent tips about how to take the antibiotics. Things like taking them with sufficient water to stay hydrated and also taking them right before eating.
The traditional therapy for NTM lung disease is typically three different antibiotics, so as soon as I was diagnosed, that’s what I was prescribed and started taking. The antibiotics have been very helpful, but I had to work with my doctor on dealing with some side effects.
What have you learned about coughing?
Part of my therapy involved learning how to cough properly. With my bronchiectasis, it was difficult for me to have a productive cough, or cough in a way that would get mucus out of my lungs. I would cough, but the more I coughed, the more my airways closed. The doctor gave me some videos to watch that were very helpful. They showed me how to cough the right way, and I was able to hear what a proper cough sounded like.
Is exercise part of your routine?
I’ve exercised my entire life, but I had to make changes in my routines. I’ve decreased some of the intensity and duration of the exercise I do. I’ve lifted weights for 40 years, and I continue to lift weights three times a week, which keeps my bones and muscles strong. I do yoga every day. I was very concerned about opening up my chest and my back, and I’ve learned how to do that with proper alignment in yoga stretches and poses. Yoga also gives me balance and stability. I also hike. What works for me may not be appropriate for everyone; you should consult with your doctor before starting any exercise routine.
I also do aerobic exercise because my doctor said I need to strengthen my lungs; I do interval training on an elliptical machine. I do a combination of walking, jogging, and running. At first, I was really breathless after running for 20 seconds, but now I can run for almost a minute before feeling out of breath.
How do you fuel your body to stay healthy?
My doctor advised me that it takes lots of calories and energy to fight my NTM infection. I’ve always eaten healthy, and I eat many fresh fruits and vegetables. I also stay away from foods that cause inflammation for me, like refined sugars.
For me, it’s important to make sure I get enough sleep and also enough rest. I can’t emphasize that enough. Sometimes I’ll take a nap. I couldn’t do that when I was working, and that was challenging.
Being diagnosed with NTM lung disease has made me much more aware of my body’s needs. I send a lot of gratitude to my lungs and to my entire body. I’m just grateful for how my body functions and all the things I can do to support it, such as exercising, eating well, and getting plenty of rest.
The emotional aspect of NTM lung disease
How do you deal with the emotional impact of your disease?
The most challenging part of the disease has been managing my feelings about it. I’m a real “what if?” person. Once I got an NTM lung disease diagnosis and began to read more about it, all these thoughts started going through my head ad nauseum. I’d think, what if this happens or that happens? I realized I had to find a way to put things in perspective.
I began meditating and practicing mindfulness, which gives me the ability to step back and look at the whole picture, discern the facts, and decide there's no value in worrying about things I can’t control. It keeps me in the present and stops me from worrying about things I could have done differently in the past or things that may or may not happen in the future.
How do you get the support you need?
NTM lung disease can be very isolating, but you can’t do this alone. It’s important to talk about your feelings with people you love and trust. You need to surround yourself with people who are good listeners because you’ll really need their support. And you also need to have a good time—you can enjoy your life. Your doctors are also there to support you. You are a partner in your care. You have a responsibility as well as a right to be involved in your treatment and management of this disease.
How do you talk to people about NTM lung disease?
In public situations, people might notice my coughing, and that might make them uncomfortable. I always think their underlying concern is, “My gosh, what does she have and am I going to get it?” Especially around flu season.
I try to keep things simple. I’ll say, “Look, I have this condition or I have this diagnosis, but I’m not contagious. What caused my lung disease is something in the environment that everyone is exposed to, but people with healthy lungs don’t get it.” And then I might say, “Forgive me for coughing so much.” And I always cover my mouth with my sleeve. Talking with people this way makes them feel comfortable with me and with the situation. If people are curious, I give them more information, but I’ve learned not to overload initially. I keep things simple and address their fears.
What would you tell other people with NTM lung disease?
Be kind to yourself. Your fears are normal. Just go forward one step at a time and concentrate on the here and now. Follow your treatment plan. When I did that, I started feeling better, I regained a lot of my energy and I felt empowered. Hopefully, you will have the same reaction.
Experiences with NTM lung disease vary for each patient. This blog post should not be construed as medical advice. For more information about your specific situation, please consult with your doctor.
This blog post is sponsored by Insmed Incorporated.