Member has chosen to not make this information public.


Member not yet following any Pages.

Posts (225)

Nov 10, 2019 · My bronchiectasis specialist is leaving! in MAC & Bronchiectasis

windwalker yes, I couldn't do the 4-week on/off so they put me on 2 weeks on/off. More than that gives me serious breathing problems. But I plan to stay with it a while longer. I started in March and can see no improvement in either MAC or pseudomonas. Perhaps I need more time. Yes, I do albuterol followed by saline (and then toby when I'm on it). So wish I could see improvement. I also just finished 14 days of cipro 1000 mg daily…… don't see any results from that either. Kind of discouraged, Terri. Jan

Nov 7, 2019 · My bronchiectasis specialist is leaving! in MAC & Bronchiectasis

colleenyoung and rits My pulmonologist is in Rochester Mn (10 hours from here). I have some MAC, but he has chosen thus far to not treat. He feels if we can rid the pseudomonas that perhaps the MAC will not cause any trouble. I've been on tobramycin for 8 months and more recently cipro for 14 days — which I finish tomorrow. As I'm writing this, my cough has lessened considerably in the past 3 days but I'm just hoping it isn't a short break and will return soon. It's been a hard session. In February my sputum tests came back with "many" MAC — after being on toby for 7 months did another test and it came back "few MAC"….. so I'm feeling perhaps the pseudomonas is the bigger problem right now. So hoping I can avoid the Big Three. I'll be anxious to know how you feel about your next specialist —– I'm going to see one closer to me in about a month. Not giving up the one in Rochester (Mayo's) but hoping to find someone a little closer in case of emergency. I oftentimes feel like I need some encouragement but am sure many others feel the same. Let us know how you do.

Oct 30, 2019 · New type mouthpiece for Albuterol in MAC & Bronchiectasis

Thank you for that post, sueinmn

Oct 29, 2019 · New type mouthpiece for Albuterol in MAC & Bronchiectasis

ethan mcconkey I have not heard from Mayo's concerning the mouthpiece — so I can't add anything yet. I'll mention it again in a note to him. It sounds good to me. Let me know if you learn anything more


sallykuni — thank you for posting such a positive note. I think we sometimes feel there is no end to it and perhaps you are showing us bright days

Oct 15, 2019 · Medical Cannabis for MAC in MAC & Bronchiectasis

suenfl….. definitely would like to know what you have learned. Thank you in advance

Oct 13, 2019 · New type mouthpiece for Albuterol in MAC & Bronchiectasis

I just learned a couple of days ago that there is a new quicker way to deliver albuterol and saline that I knew about. Perhaps most of you know and if so, I'd like to have your input on what you think of it. It's called Phllips InnoSpire Go…… brochure says it delivers all the albuterol in 4 minutes and it's not connected to the usual-type nebulizer. It's just a small piece (battery operated) that you pour the saline in and turn it on. Put it in your mouth and breathe normally and it should be over in 4 minutes. I believe the cost is 200-225. It says you need a prescription to acquire one. Does anyone know anything about this? I found it quite interesting. Wish it would work on tobramycin too. I also thought with a prescription perhaps Medicare would cover all or part of the cost. I have emailed pulmonologist at Mayo's to ask about this but he's out of town for several days.

Sep 29, 2019 · Began IV CefTAZidime and Toby in MAC & Bronchiectasis

fdixon63 I started toby in March of this year. I'm on my 6th round of it (for 2 weeks). Toby hasn't yet seemed to help me; however, I was told upfront it would take a few months and of course I'm doing only the two week/on/on program versus the 28 day. I nebulize twice daily with albuterol followed by 3% saline. No, I've never been prescribed the antibiotic you are using. I'll be interested in whether that works for you. I cough horribly — that's my problem. Lots of green phlegm. Don't know if this info helps but you are welcome to ask anything you'd like.