You and your doctor can work together as a team as you treat your nontuberculous mycobacterial lung disease (NTM).
At your regular checkups, talk to your doctor about your progress, treatments, and what you can do to take care of yourself.
- Write down any questions, symptoms, or side effects you’ve had since your last visit.
- Ask a family member, partner, or friend to come with you and take notes.
- Bring your calendar so you can write down any changes to when you’ll take your medicines or need to get tests.
Get the Facts
Ask the doctor to tell you a little more about NTM lung disease. If you know more about your disease, you might have a better idea of what to expect.
You can ask questions like these:
- Which strain of bacteria caused my infection? Your exact infection can help the doctor choose the best treatments.
- Where could I have picked up this infection so I can avoid these sites in the future? Hot tubs, indoor pools, and steamy bathrooms are all places these bacteria can grow.
- Could I get infected again after my treatment is over? Yes. Find out what you can do to prevent it.
- Are my symptoms normal? This disease affects each person in a different way. Let your doctor know what symptoms you have.
- Can I pass it on to others? No. It isn’t contagious. Your family doesn’t have to worry.
- How often will I need to come in for tests? Your doctor can give you a schedule for tests like sputum cultures, which show how well your treatments are working. You may also need regular blood tests or CT scans to take detailed pictures of your lungs. These can help your doctor track your progress.
Talk About Treatment
The process may take a year or more. Some people need to have ongoing treatment to keep this disease in check.
These questions will help you know what to expect:
Which medicines will you prescribe? There are different antibiotics used in combination for each type of NTM infection.
Why do I need to take more than one antibiotic? Most people with NTM lung disease need a combination of medicines. One antibiotic usually doesn’t clear up the infection.
What side effects can I expect? All antibiotics can cause side effects. Some are serious, like hearing loss. Find out when to call the doctor. Ask if there’s anything you can do to manage side effects.
How long will I be on medication? The type of infection and your overall health may affect how long your treatment will take. Some people take medicines for up to 2 years. Your test results help the doctor decide when you can stop.
How often will I have to take my medicines? Ask the doctor to explain when to take your drugs, how to take them, and what to do if you miss a dose.
Will I need surgery? You might have it to remove damaged tissue. It can help you breathe more easily. Ask your doctor if it’s right for you.
Ask About Complementary Treatments and Self-Care Tips
There’s a lot you can do on your own to feel better. Talk to your doctor about complementary treatments you can try or healthy changes you can make in your daily routine.
You can also take steps to prevent a new infection once you’re done with your treatment.
Can complementary treatments help me cough up more mucus? You might try mist devices and coughing techniques to help you clear out your lungs and breathe easier. Ask your doctor before you try any new treatment on your own.
Should I change my diet or activity? Aerobic exercise like a daily walk is good for you if you have NTM lung disease. Eat healthy food and manage your weight if you can.
How can I prevent new infections? NTM bacteria often lurk in wet, steamy places. Talk to your doctor about how to lower your risk. You may be able to make simple changes, like using a vent fan to clear steam from your bathroom after you shower.
What can I do to manage my feelings? Like any chronic illness, NTM lung disease can make you feel depressed, anxious, or stressed. Speak up if you’re having a hard time. Ask the doctor about treatments, counseling, or support groups. You can also find support groups online.