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1 day ago · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@angiejohnson My Pulmonologist and myID doctors are suggesting lobectomy also. This is my second MAC infection and bronchiectasis is getting worse. How long did you stay in the hospital? Did they place a chest tube after surgery? I am scared to have the surgery, but I think It makes sense to get it done. If brochiectasis is getting worse, it might affect my entire right lung if I keep getting infections. Don’t know what to do. I always pray that God will lead me to the right decision.

Tue, Mar 12 8:02pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@spencersok Thank you for the prayers. My pulmonologist suggested surgery (lobectomy) if medical management will not treat the Infection.

Tue, Mar 12 7:03pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@windwalker @heathert @supermom890 here’s an update from jasmine321. My CT scan looks worse; initial scan in 2012 only right middle lobe was affected. CT scan in January 2019, bronchiectasis spread to small part of lower lobe. Underwent bronchoscopy in February. Copious mucoid yellow secretions were found in the right mainstream bronchus, in the right middle lobe and in the superior segment of the right lower lobe. My Pulmonologist partnered with an ID doctor. ID prescribed Ethambutol, Rifampin and Azithromycin daily plus Arikase inhalation. I read the packet sent to me about the Arikase inhalation and found out vertigo and tinnitus are common side effects. I already have vertigo that’s why I don’t drive far. My husband drives me to work at times. I also have ringing in my ears. Therefore I told the ID doctor that I will do the 3 antibiotics for 6 months, and if no improvement, we will add the Arikase inhalation. I work full time so I cannot afford to call in sick all the time because of the side effects of the medications. My first treatment was MWF for the 3 antibiotics. Now, my ID doctor prescribed the big 3 daily. Wondering if daily is too much. Today is my fifth day of taking the big3. So far, no problems. Taking probiotics with prebiotics.

Nov 11, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@tdrell I was diagnosed with bronchiectasis and MAC in 2011. Took triple antibiotics for 12 months and was MAC free for 7 years. I saw my pulmonologist last month because I was having more frequent dry coughs plus occasional productive coughs. He ordered sputum culture and AFB. Sputum culture was positive for staph aures. My pulmonologist was on vacation when the results came out so the covering physician ordered Levaquin for 7 days. After Levaquin, I’m back to baseline. Saw my pulmonologist last Friday and he said I have mild MAC. He ordered CT scan because the chest xray done last month looks worse than my chest X-ray 3 years ago. He’ll decide on what to do next when he gets the result of CT scan. For now, I feel a lot better, just occasional dry coughs. He told me to continue with nebulizer twice a day and the flutter valve (acapella -green) daily.

Nov 10, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hello @heathert my sputum culture is growing MAC again after being free from it for 7 years. I’m having CTscan next week and will see my pulmonologist the following week. He’s thinking of prescribing the 3 antibiotics for 6 months and also put me on the Amikacin liposomal (inhaled). He might also do brochoscopy depending on the results of the CT scan. We haven’t discussed this newly approved medication, he only mentioned it in passing. I’ll have to talk to him more about it because when I read about it, seems like there are some side effects. I am glad you didn’t experienced any serious side effects.

Nov 10, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thank you for the reply Heather. How long were you on it? Any side effects?

Nov 9, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Have you heard about the new FDA approved medication for MAC called Arikayce?

Oct 24, 2018 · Are all of you NJH patients with MAC doing pulmonary hygiene? in MAC & Bronchiectasis

Thank you Terri. I also have a massager that I bought a while back. That's what I’m using now.