Community Members Share Their MAC Lung Disease Experiences

Navigating a MAC lung disease diagnosis can be challenging. There can be a lot of uncertainty and many questions that arise. It helps to keep in touch with your doctor, but they might not always be available.

There also may be questions you do not feel comfortable asking your doctor. You may want to get the perspective of someone else living with MAC first. This is why building a support network can make a big difference.

Several members of our chronic obstructive pulmonary disease (COPD) community shared their experiences with having MAC lung disease. Their comments help paint a picture of what life with MAC is like.

Trying to get an accurate diagnosis

Symptoms of MAC lung disease are often mild or not specific. Symptoms can overlap with those of existing lung issues. Some people may have no symptoms at all. Also, everyone is exposed to MAC germs all the time, so tests for those germs can be positive even when someone does not have an active infection.^1,2

All of these factors can make diagnosis difficult. Diagnosing MAC may require multiple tests.^1,2

“My pulmonologist thinks MAC might be causing my chronic bronchiectasis, cough, fatigue, and weight loss. She is still waiting for a final culture result.”

“At first they told me it was lung cancer. By the time we got the correct diagnosis, I had 30 to 50 nodules of infection in each lung.”

“Diagnosis was made after pulmonary function tests, multiple chest CT scans, sputum cultures, and blood work. My pulmonologist put it all together.”

Working with your doctor to find a treatment plan that works

Treatment for MAC lung disease can last a year or more. Taking antibiotics for that long can be tiresome, but it is important to follow your doctor's treatment plan. MAC germs can become resistant to treatment if you do not take antibiotics as prescribed. This can make curing MAC much harder.^1,3

Talk with your doctor before making any changes on your own. Finding a plan that you can stick to can help reduce the risk of MAC resistance.

“After being on 3 antibiotics every MWF for 8 months and dealing with side effects, I asked my pulmonologist for a break. My latest sputum culture still shows some bacterial growth. My blood counts have been fine. It was the limitations of just taking the antibiotics that made my decision.”

Navigating treatment side effects

Along the MAC treatment journey, many people experience side effects. In some cases, side effects can be severe. Ask your doctor about what to expect and who to call when you have issues so that you can address problems quickly. Managing side effects can take a lot of effort, but sticking to your treatment plan is key to success.^3,4

“I took the meds ethambutol, rifampin, and azithromycin 3 days a week the whole time. I had to stop medication due to such severe weight loss. I ended up with a feeding tube . . . it is quite difficult to eat when you are not hungry.”

“I am currently taking a regimen of 3 antibiotics 3 days a week – MWF. The side effects keep me home on MWF. Tuesday, Thursday, and the weekend I try to get out. That is always a maybe.”

Managing multiple health issues at once

It is common for people to manage other lung issues alongside MAC. Having some lung conditions, like COPD, can increase your risk of getting MAC. Partnering with your doctor is critical in balancing multiple health issues at once. They can help you adjust treatment options and create plans that address all of your health needs.^1,5

“I did also smoke so I got a double whammy. COPD from smoking and from the MAC . . . My pulmonologist and PCP push me to keep moving forward and watch for triggers . . . I keep exercising and watch the weather.”

“I am fortunate to have a very responsive pulmonologist and medical staff.”

Each person’s experience with MAC lung disease will be unique. However, challenges with diagnosis, creating the right treatment plan, treatment side effects, and managing multiple conditions at once are all common.

What is your life with MAC like? How have you overcome some of these issues, and who do you lean on for support? Tell us below.