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New Diagnosis of MAC/MAI & I'm scared

MAC & Bronchiectasis | Last Active: Oct 13, 2022 | Replies (349)

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@hydrang3a

I have been away from this blog since recovery from the flu summer 2020 and enjoying great health until May 2021. May began with Bloody nose, headaches, coughing, fatigue, chills, weakness and uncontrollable shivers….Recent CT and Broncoscooy smears and cultures test positive once again for AFB….now the wait begins again to isolate the kind of micro bacteria for ideal antibiotic combo. In 2018 was on 8 weeks daily IV Amikacin followed by 18 months big 3 orally and Arikayce. Cultures and health improved. Negative for NTM. However it’s back now with a vengeance. Pulmonologist who did broncoscopy said right lung had massive amounts of infection. I am miserable….sick with weakness, quivering, and highly emotional…can’t do what I need and want to do…trying hard to eat well and take at least a brief walk every day…but it is increasingly challenging and being inside this quivering body it is hard to keep a positive attitude, I am very sad and depressed. Need help.
Any words of advice for one who is very sick with NTM please.

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Replies to "I have been away from this blog since recovery from the flu summer 2020 and enjoying..."

I am so sorry to hear you are back in this situation. Who will be treating you?I remember 2017, 2018 and 2019 when I was so sick. All I can think of to say to you and @irene5 is to hang in there!

What kind of airway clearance are you using to try to loosen things in your lungs?

If you are really down, maybe Irene's suggestion about an antidepressant is worth considering.

Do you have someone to help you with chores until you feel better?

Sue

So sorry for how badly you feel. Sending hope and prayers for “one day at a time” mentality that will eventually lead to “one week at a time”. It will get better. It’s a tough road, but you’ve got this.