Two bits of good news!! (and nebulizing with saline)

I have bronchiectasis and my pulmologist began nebulizer treatments with 3% saline immediately. When I did not have much production he ordered me a percussion vest which has helped tremendously in clearing my lungs. This is very important with bronchiectasis. I would think you would be placed on nebulizing right away. Rits gave an excellent explanation. Do you also have MAC and thus the antibiotics?

I, too, was diagnosed with MAC/Bronchiectasis in mid-March. I started on the 3 antibiotics immediately. I left a message with my pulmonologist several weeks ago (after reading the posts on this site about thumper vests and saline nebulizers etc) asking if there were any other therapies that he would recommend for clearing my lungs and his nurse called back and said “no, only the antibiotics.” So I guess I am wondering why you guys on this site are receiving this treatment but I am not. Is it recommended only in cases of severe vs mild Bronchiectasis?

@hayn3705 I was dx with mild bronchietasis in 2016 and MAC/MAI. I have no symptoms from the NTM infection so my Dr and I agreed NOT to treat with the antibiotics. I was told to use an Aerobika for lung clearance. Since that time I moved and switched pulmonary Drs. He was also in agreement about no antibiotics yet. After reading about nebulizing with saline on this forum and in other studies, I requested the prescription from my Dr so he prescribed .9%. I now use 7% saline, and still have no symptoms from the NTM. I still do my lung clearance 2x per day. I haven't had a sputum test in 2 years, (which I will probably make an appt for this summer), and my CT scans remain the same. Maybe you can request it from your Dr. It can't hurt but definitely may help. And definitely ask about lung clearance. That's very important with bronchiectasis to keep the lungs clear of mucus.

You should probably have a sputum check to see what is going on. They can send you the materials to collect it and send it to them. I'm sending my samples from Chicago to Texas and it takes 5 days to arrive. I was told that using their packaging, the sample is good for two weeks.

Thanks for the advice!

Didn’t know you could do that. Thanks!

@hayn3075 I am a big proponent of being your own best advocate in your care, as are many on this group. As far as I know, lung clearance is important in most cases of bronchiectasis. It helps clear the sputum, which damaged lungs no longer do efficiently on their own, so the bad bugs like MAC cannot grow.

One of the most important factors in dealing with any uncommon chronic condition is finding the right caregiver. That would be someone who frequently treats bronchiectasis and MAC, and keeps up with the most current treatment protocols. It might be time to look for someone near you who does that, or to visit Mayo, National Jewish Health or another regional center with a group of lung specialists.

I am curious what testing was done to determine your diagnosis of Bronchiectasis and MAC, and what symptoms you are currently experiencing. If I recall correctly, you have been dealing with taste and appetite issues since you started medication. How are your doing now?

Sue

Hello Marellen! Most of us with bronchiectasis and/or mac infection use nebulized saline in conjunction with our antibiotic treatments. It is considered good lung hygiene, sort of equal to washing your hands, only it's lungs. NIH (National Institute of Health) did studies that showed what strengths of saline killed specific strains of bacteriums. 7% was specific for Avium Bacterium which is mac/ntm. There is a chart that lists those, I will dig through my files and look for it. My Mayo dr had put me on the 7% saline back in 2013. I tested negative for mac by 2014. Mayo drs are held in the highest esteem worldwide, so take my drs choice of 7% as Gospel. I still nebulize saline to this day to keep my lungs clear. I have not read your link to the article yet, but I will. I think the lower % saline may work ok especially for those on the newer meds like Arikayce, I don't know for sure. For those who cannot tolerate the 7%, then go lower, some os better than none in my opinon. All I can say is; back when I first joined this group years ago, hardly anybody was on the saline. Between myself and a few others who preached constantly that we all should be doing it; most in our group here now use it. I will tell you this, when I first became a Mentor for this group; there was a lot of virtual hand-holding. Many members were so sick, crying, and scared. The symptoms of active mac infections can be quite miserable. I have noticed that as more and more of us started using the saline, the level of misery has gone down, and people are starting to test negative for mac.

windwalker…….thank you for the post. It always gives us a little ray of hope. Personally, I'm plagued with pseudomonas as I have been for over a year. Have done the toby for more than a year -- still positive for pseudomonas. Going to try it a while longer, I guess. It is discouraging. The constant coughing and phlegm is quite embarrassing and hard to work with if you're going out at all. With the pandemic, I could clear the whole WalMart store in 3 minutes. Ha! Therefore, I don't go in, of course. Thanks again for all you do.

Congrats Rita! You are added to the list of those is finally tested negative for mac! It took a lot work, but you got there!!! Way to go!