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Bronchiectasis: Is nebulizing helpful?
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.
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Great news! How do you feel compared to a yar ago?
Sue
That's wonderful, Kathy. Thank you for sharing that! Can you briefly share your other lifestyle and dietary changes? Was it gluten free changes?
I have to say that improvement happens so slowly that I was surprised to see the test come back negative. However, now that I think about it, I don’t need a nap anymore so that’s an improvement. I’m also less likely to have productive coughing fits at random times during the day. I have days when i feel quite normal so that’s saying a lot!
I will not stop nebulizing though as I have bronchiectasis and I fear that the mac will show up again if I’m not vigilant.
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2 ReactionsKathy -
Thanks for taking the time to tell us. I like to refer to the state you and I are in as living our best lives, with bronchiectasis. It's kind of comparable to my husband who has been living his best life, with diabetes, for over 25 years. It requires vigilance, self-care and self-awareness to stay on top of small changes before they become catastrophic. As you know, it includes being your own researcher and advocate, to get the best possible care.
Please keep encouraging others with your success story!
Sue
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2 ReactionsI am reluctant to call this a success story but I liked to see you call it that :). I shared it here because people who have not experienced bronchiectasis and Mac (and people that I’ve told) do not realize what a big deal it is to get a negative sputum test. I also shared it to encourage people who are nebulizing and doing everything else they do for their health to persevere with it.
Anyway, I agree about living our best lives and being our own advocates and researchers. I have read and I’ve been told (many times) that bronchiectasis and mac are not curable and therefore the best that I can hope for right now is that the Mac is in “remission”. I know that I have to be vigilant to do my best to keep it that way or to stay on top of small changes.
I thank you and other mentors and people with bronchiectasis and mac for participating in such a rich and helpful forum.
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1 ReactionVery interesting to me because as I have posted in the past, my pulmonologist doesn't believe nebulizing is necessary. He stated as long as I use my inhaler prior to doing my smart vest, I will get the same results. I'm having a problem with this mindset. Any input from those who may have dealt with the same thinking from their doctor?? Thank you !! Toni
Thank you so much, Don. I'm going to investigate this further because from everything I read on this site, nebulizing is the way to go. and..... why not do both ? Right??
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 !!
I have been following this discussion for many months & appreciate all who post. I was quickly diagnosed nearly 4 yrs ago with bronchiectasis & MAC. My symptoms have been mild with the exception of hemoptysis which originally led me to the ER & later to the brink of the “big 3”. My pulmonologist suggested nebulizing 3% sodium chloride about 16 months ago which I did faithfully. My hemoptysis continued with incidents occurring more often. In February after discussion with my pulmonologist, I started mixing 3% & 7% & eventually was able to easily tolerate 7%. When I saw my pulmonary Dr. in April, she recommended treatment with the big 3 as my hemoptysis continued every few weeks. At her referral, I also saw an infectious disease Dr. & he did not believe my symptoms warranted antibiotic treatment. I told them both that I expected to cough up blood or clots in the next day or two, but otherwise I had no challenging symptoms (ha?). That was nearly 3 months ago. I believe the 7% sodium chloride has made the difference & I owe its use to all of you who share your wisdom & experience.
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3 ReactionsI am convinced that the team approach has saved me from unnecessary rounds of antibiotics. And I am lucky to have a choice of docs in a large metro area. You could also try Vanderbilt in Nashville and National Jewish Health in Denver. There are also Johns Hopkins and the U of Maryland Medical Center in Baltimore that may be closer.
Good luck with finding the right doc.
Sue