1. < MAC & Bronchiectasis

New to Forum & new to treatment what 2 expect

Posted by kellykvent @kellykvent, Mar 28 9:17pm

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?

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notnancy88 | @notnancy88 | Mar 28 10:37pm

I am so sorry about your distress. Have you had your sputum tested or during your bronchoscopy was a bronchoalveolar lavage performed and that confirmed the MAC?
I already had hearing loss with tinnitus due to my military service. My hearing loss and tinnitus have both increased since January 2023 when I was prescribed amikacin along with three other drugs by IV infusion.
Each time I travel to the UT East Texas Pulmonary Clinic one every three months, I have a Pulmonary Function Test. One yearly, a Lung CT is ordered. I send in a sputum sample by FedEx or UPS every month.
I try my best to stay upbeat about the situation.

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bsi15 | @bsi15 | Mar 29 2:48am

that's why we need a central worldwide organisation that checks
and stores the CTs with experts and databases and software,
including AI.

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irene5 Irene Estes | @irene5 | Mar 29 6:08am

Oh dear! @kellykvent welcome to this forum. I’m so glad you found us now! If the doctor who has been treating you is your pcp that’s probably why you weren’t diagnosed. I kept complaining too and it wasn’t until a family member who is an obgyn ordered a CT scan that my MAC was seen. My PCP thought I was depressed because I retired even though I told her I retired only because I didn’t feel well. With that said you need two things if you don’t already have them: a pulmonologist familiar with MAC and an infectious disease doctor who is familiar with MAC. Everyone’s journey is different. Some people have trouble taking the Big3 while others have no serious side effects. See if you can go back in this forum to posts about time of day to take them and foods to eat that might help and pro/prebiotics. Sue on this forum is a wealth of great info along with many others. It has been suggested research wise that you may not need rifampin so if you can’t tolerate that one that might be ok to not take depending on what your doctor suggests. As far as hearing loss everyone is different. I was more concerned about my eyes from ethambutol but that was not a concern. Get a baseline eye exam first. Azithromycin and/or Clarithromycin can be harsh but you can swap one out for the other. I had some ringing in my ears from the azithromycin but no hearing loss and was switched to clarithromycin. You might get stomach upset from these meds - hence pro/prebiotics are recommended and kephir. Seriously, try to go back and read other earlier posts. MAC is slow going depending on whether you have cavitiory MAC or nodular MAC. You should know this information! Only you can advocate for yourself! What I mean by that is it is your body so speak up - which it sounds like you did for quite some time. If you aren’t satisfied with your doctors look into new ones and get a CD of your CT scan to take with you. It sounds like you have a lot to deal with now since you are on oxygen. Hopefully you have a person to help you as you may tire more easily. A great thing about this forum is there are so many knowledgeable people who are here to provide information and support. Everyone’s journey is different, but we have all been on it or are in the midst of it so you are so not alone! Wishing you well. Irene5

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1 reply
irene5 Irene Estes | @irene5 | Mar 29 6:11am
In reply to @irene5 "Oh dear! @kellykvent welcome to this forum. I’m so glad you found us now! If the..." + (show)
@irene5

Oh dear! @kellykvent welcome to this forum. I’m so glad you found us now! If the doctor who has been treating you is your pcp that’s probably why you weren’t diagnosed. I kept complaining too and it wasn’t until a family member who is an obgyn ordered a CT scan that my MAC was seen. My PCP thought I was depressed because I retired even though I told her I retired only because I didn’t feel well. With that said you need two things if you don’t already have them: a pulmonologist familiar with MAC and an infectious disease doctor who is familiar with MAC. Everyone’s journey is different. Some people have trouble taking the Big3 while others have no serious side effects. See if you can go back in this forum to posts about time of day to take them and foods to eat that might help and pro/prebiotics. Sue on this forum is a wealth of great info along with many others. It has been suggested research wise that you may not need rifampin so if you can’t tolerate that one that might be ok to not take depending on what your doctor suggests. As far as hearing loss everyone is different. I was more concerned about my eyes from ethambutol but that was not a concern. Get a baseline eye exam first. Azithromycin and/or Clarithromycin can be harsh but you can swap one out for the other. I had some ringing in my ears from the azithromycin but no hearing loss and was switched to clarithromycin. You might get stomach upset from these meds - hence pro/prebiotics are recommended and kephir. Seriously, try to go back and read other earlier posts. MAC is slow going depending on whether you have cavitiory MAC or nodular MAC. You should know this information! Only you can advocate for yourself! What I mean by that is it is your body so speak up - which it sounds like you did for quite some time. If you aren’t satisfied with your doctors look into new ones and get a CD of your CT scan to take with you. It sounds like you have a lot to deal with now since you are on oxygen. Hopefully you have a person to help you as you may tire more easily. A great thing about this forum is there are so many knowledgeable people who are here to provide information and support. Everyone’s journey is different, but we have all been on it or are in the midst of it so you are so not alone! Wishing you well. Irene5

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Slow growing not slow going - haven’t had enough coffee yet! Irene5

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irenea8 | @irenea8 | Mar 29 8:11am

Did they give you any idea why you developed hypoxemic failure? You have not had BE that long. I am also now on Oxygen but I have had BE since 2001 approx. It seems most people with BE do not require Oxygen. Like you I was experiencing extreme shortness of breath for a long time and my Pulmo never mentioned lack of Oxygen as the cause until it got so bad I had to be hospitalized. I have chronic Pseudomonas infection. Do they think you will get off the Oxygen if you treat the MAC?

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