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Posts (154)

Tue, Aug 13 9:28pm · Helpful Devices for MAC in MAC & Bronchiectasis

Thank you and you do the same. flib

Tue, Aug 13 2:53pm · Helpful Devices for MAC in MAC & Bronchiectasis

Thank you, everyone for info about the vest. I have the paper work going and hope I will be able to use this within a month. Everyone has been very helpful. Good to know that vest treatment can make a difference. I hope to get a battery operated one but beggars etc. Flib

Thu, Aug 8 2:17pm · Helpful Devices for MAC in MAC & Bronchiectasis

Has anyone purchased and used Molekule, an air cleaner, It is quite expensive, around $700. I’ve seen it advertised but it’s too pricey unless it really clears the air the way it says. Also, is anyone using a respiratory vest for boronciectasis. and if so could you make a recommendation. I’ve had mac a long time but it hasn’t progressed much;ronchiectasis , however, is making it harder to clear my lungs. I do nebulize a saline solution twice a day.

Fri, Jul 26 12:46pm · Losing weight due to MAC in MAC & Bronchiectasis

A Jo Ann. I see my pulmonologist every three months. I was unable to continue the antibiotics because of hearing and some sight loss. Flib

Fri, Jul 26 12:26pm · Losing weight due to MAC in MAC & Bronchiectasis

@janovr Thank you. I was only ever on one antibiotic and got off it because of hearing loss. Both my doctors have suggested not doing the antibiotics and I'm glad I didn't. I'm nebulizing saline which is helpful. I've had the disease for ten years and it's beginning to show. I'm glad you are MAC free. That was a lot of weight in a short period of time. Golly. Flib

Fri, Jul 26 12:22pm · Losing weight due to MAC in MAC & Bronchiectasis

@sueinmn Thank you, Sue. I'm not on antibiotics and, while I have very little appetite, I don't think I've reached aversion…yet. The dairy products you mention make sense but for two things. I have some dairy sensitivity which I try to ignore. But the dairy products produce a lot of sputum which causes difficult coughing fits. I've tried to eat small meals throughout the day but never thought about shoving something in my mouth every hour. In some ways easier to keep track . If I got 200 calories in 12 times a day, that would be 2400 which is better than what I am doing. And I could collapse some of this. It's a new way of thinking. Right now I am eating a banana. My goal for now is to gain five pounds and get back to hundred. I'll let you know how I'm doing. It does help to know others have had this experience. Sometimes I feel nutty with all the fatties around me tut tuting. Flib

Wed, Jul 24 6:12pm · Losing weight due to MAC in MAC & Bronchiectasis

I understand that weight loss is part of the MAC experience. I keep losing. I am 5’7” and weigh 95lbs down from 120 over the two past years. The loss seems to be accelerating. Quite worried and I welcome any suggestions or sharing. Flib

Sun, Jul 14 3:52pm · Disinfecting nebulizer in MAC & Bronchiectasis

I put parts in bowl with dish soap and pour in boiling water, then rinse and air dry.