Discussions
Discussions
Scared 2 Start MAC Treatment cause of side-effects
I was very surprised to see a forum for this affliction. Had MAC since 2019 but Dr decided to recognize it only recently after having a bronchoscopy. Looking back at all my CT Scans it was there all the while & why it was chosen to be overlooked is a mystery. I have COPD but was complaining of severe shortness of breath that my pulmonologist said wasn’t from my lungs must be heart (I get ct scans every 6mos, looking back at those reports all have MAC all over them) but I listened, went thru a wild goose chase with heart drs & other specialists to come back to my lungs. A broncoscopy was ordered and now Dr says this is what’s goin on. I dwell on that this wouldn’t be so bad if he didn’t overlook it from the start & why would he? I just got out of a short hospital stay for acute hypoxemic failure now have to breath with oxygen & soon my MAC treatments will start, I am scared to death! I’m scared of the side-effects. My hearing is the Only good thing I have left and I read that this can be affected by the antibiotics. I need to know what to expect so I can brace for it, can someone please answer truthfully what I have to look forward to especially in the beginning stages of treatment
Replies
KitKat,
Hello! Welcome to the community- I am so glad you found this group. Unfortunately, you are not alone in being misdiagnosed over an extended period of time. I feel your frustrations and disappointment with your health care provider over the past years.
We have assistance available for you in many forms. In addition to the community support you receive here on BronchiectasisandNTM360, you can call one of our Patient Ambassadors directly by phone at (833) 411-5864. Our Ambassadors are real live patients with experiences similar to yours and understand what you are going through.
You can also email us at contactus@bronchandntm.org to get more information about starting the NTM medications.
Our Ambassadors can’t provide medical advice but may be able to assist you with additional information and resources about your NTM journey.
It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. We make every effort to support our members, our medical professionals cannot and will not provide a diagnosis or suggest a specific medication; those decisions should be left to your personal medical team. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.
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