1. < MAC & Bronchiectasis

Bronchiectasis: Is nebulizing helpful?

Posted by gej53 @gej53, Aug 8, 2021

Hi guys, hope I am posting this right. I have had bronchiectasis and have been nebulizing for two years now. A friend recently visited and said she has a history of pneumonia seven times and saw bronchiectasis on her scan. However, she does not nebulize. I was pretty surprised. Makes me wonder, is mine worse that hers on an xray? Is her doc remiss in not ordering her to nebulize? Does not everyone nebulize who has bronchiectasis? Any thoughts? Thanks so much.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

extracare808 | @extracare808 | Sep 24, 2021

NTMir video on importance of airway clearance

REPLY
extracare808 | @extracare808 | Sep 24, 2021
In reply to @toni1132 "Thank you for this, Sue. Quite honestly, my ID doctor is completely devoid of conferring with..." + (show)
@toni1132

Thank you for this, Sue. Quite honestly, my ID doctor is completely devoid of conferring with my other doctors. Her mantra is..... I'm the ID doctor. I prescribe the meds...... hello !!! I live in Virginia Beach. I called to Jacksonville, Fl. and was told they didn't have openings for new patients. She referred me to Minn.. I may contact North Carolina State. I believe they have a clinic there for Bronch/MAC. I've got to recheck. Thank you !!

Jump to this post

Since you're in VA, have you tried the NIH? It's considered one of the national centers for treating MAC.

National Institutes of Health, Bethesda, MD
http://www.nih.gov

REPLY
thumperguy | @thumperguy | Sep 25, 2021
In reply to @gej53 "I have at CT and then see the doc to review the results on Sept. 20th...." + (show)
@gej53

I have at CT and then see the doc to review the results on Sept. 20th. Here's hoping...

Jump to this post

Gej, do you know the result of the Scan that you were to have on 09/20? Don (Thumperguy)

REPLY
extracare808 | @extracare808 | Sep 25, 2021

Clarification re: NIH. They will only consider you as a clinical patient at their clinical center if you happen to be a fit with a current study. Doesn't look like the currently have any NTM studies in progress. UT Tyler is considered an NTM CoE and has a list of national centers/treatment institutions on their site:
https://www.maclungdisease.org/list-of-treating-institutions/

REPLY
toni1132 | @toni1132 | Oct 5, 2021

Thank you, Sue. Yes, I think as soon as my move is complete ( to our other house) I will start investigating a new pulmonologist and ID doctor who are more pro-active and not just re-active. Thank you for always being there to help us all 11

REPLY
pal131 | @pal131 | Oct 21, 2021

Does anyone have a pulmonologist in Naples FL that is proactive and doesn’t just put you on the drug program right away.

REPLY
View MoreView Less
Please sign in or register to post a reply.