A woman talks to her doctor, has her hand on her chest

Questions to Ask Your Doctor About Living With MAC

Reviewed by: HU Medical Review Board | Last reviewed: December 2022 | Last updated: December 2022

If you have been diagnosed with MAC lung disease, you might have many questions that need answers. A lot of new information may be thrown at you during your doctor’s appointments. It can be easy to forget which questions you wanted to ask or not know where to start.

Reading about some common themes around a MAC diagnosis may help you make the best of your time during appointments. Different questions will arise based on where you are in your MAC journey. Consider bringing a list of questions to each appointment so you can set expectations and have productive conversations with your doctor.

Understanding your MAC diagnosis

Many people have not heard of MAC lung disease before they are diagnosed. Asking basic questions about your MAC diagnosis will help you get your footing.1-3

  • What tests let you know I have MAC? Do I need any other tests to confirm my diagnosis?
  • What put me at risk for MAC?
  • What type of MAC do I have? What areas of my lungs is it affecting?
  • Is my case mild or more severe?
  • Who should be on my healthcare team?
  • Do I need to see a specialist doctor?
  • Based on my health history, what might the future look like?

Planning for treatment

Not everyone with MAC will start treatment right away. And certain treatments may not ever be right for you. Creating a realistic game plan with your doctor that you can stick with is important for treatment success.1-4

  • Should I start treatment now? What are my options?
  • Will I need to take oral prescription drugs? How often, and for how long?
  • Do I take all of my drugs at the same time? Do I need to eat before taking them?
  • Based on my other health issues and treatments, are there any medicines I should not take?
  • Are there any vitamins, supplements, or medicines I should stop taking before treatment starts?
  • Will I need surgery?
  • Should I use airway clearance methods along with my treatment?

Monitoring your treatment

Once a treatment plan is in place, stick to it and check in often with your doctor. Understanding where to go for help and what to expect can help you address any issues as soon as they arise.1-3

  • What side effects are possible on this treatment plan?
  • What are the most concerning side effects to watch out for?
  • Who should I call if I am having trouble managing my side effects?
  • Will I need to repeat any tests or lab work during treatment?
  • How will you know my treatment is working? At what point would we need to change the plan?
  • How often do I need to check in with you or other members of my team?
  • After treatment, should I be worried about relapse or reinfection? How do I reduce my risk?

Improving your quality of life with MAC

When living with MAC lung disease, many people feel anxiety, depression, or stress. Planning ahead for how you will manage these feelings and seek support can help improve your overall quality of life. Making certain lifestyle changes can also prepare your body to fight your lung infection.1-3,5

  • Who should I call if I start to feel anxious or depressed?
  • Are there any in-person or online support groups you recommend?
  • Should I add a therapist or other mental health professional to my team?
  • What is the best diet for me? Should I see a dietician or nutritionist?
  • Can I exercise? What are my limitations?
  • Would chest physical therapy or pulmonary rehab be helpful for me?
  • What other lifestyle changes can I make to improve my health?

Which questions you ask and how often you ask them are up to you. You may want to bring a loved one to your doctor's appointments to help you remember which questions to ask and what your doctor's responses were. Finding the best way to communicate with your healthcare team can help set expectations, keep you on track with treatment, and prevent any major issues before they come up.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RareDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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