Newbie question - Have you been told you should not neb with saline?

Well, it is a regular part of the recommended treatment routine for bronchiectasis at National Jewish Health (https://www.nationaljewish.org/conditions/bronchiectasis/bronchiectasis-overview/treatment) and they are pretty much the gold standard for quality in this disease.

I'll share my personal experience. My first pulmonologist didn't want me to neb saline or anything, even though I have asthma & bronchiectasis, had a very bad case of MAC, was quite ill, coughed a lot and had copious mucus. He blithely said "there's nothing to that" and just use the Acapella (he didn't like the Aerobika either.) As I continued to get worse over one year on the Big 3, 3x a week, I asked him if there was more we could do, and he told me to "go home & be patient."

My primary got me a consult with an infectious disease doc (this is all within one large medical/multi-clinic group) who did a CT that showed I was getting worse, increased my meds to every day, and added a nebulized med every day. At my next pulmonology appointment, the original pulmonologist "fired" me! Said if I wanted to see someone else, I didn't need him any more - even though I still have asthma, bronchiectasis and MAC. The ID doc referred me to another, excellent pulmo, just down the hall.

About that time (late 2019) a few people on Connect started talking about 7% saline, and how it was helping them. I was getting desperate - the side effects of the Big 3 were worse and worse, but my MAC was "not quite gone." With the consent of my ID & pulmo docs, who consulted with NJH, I decided to stop the antibiotics and switch to daily airway clearance and 7% saline nebs only.

Fast forward 29 months to today - I still use the nebs, once a day, and airway clearance. If I don't use saline, my airway clearance doesn't bring up mucus, but if I use it a lot of junk comes out. If I skip for a few days, I get a pretty tight chest and begin to wheeze.

While still short of breath pretty often, I have regained my lost weight and most of my energy. I have had just one exacerbation since stopping the meds, and it was treated with steroids and a short course of antibiotics. But - through everything - I have continued to be (carefully) around people and been able to stay healthy, haven't even caught my grandkids' colds.

Mark me down as a big believer in saline therapy. I will be very interested in hearing why your doctor doesn't use it. Did the doctor take sputum samples to see what might be in the nodules in your lungs?
Sue

Thanks for sharing your experiences, Sue! The bronch was with BAL in the areas where my nodules are the worst so they will culture that. I don't think I could bring up anything from my lungs for a sputum sample. I will definitely be questioning the respiratory therapist next week about why I can't start saline neb. It just doesn't make sense to me. I will also be asking how many bronchiectasis patients my doctor has treated over the past year. I have a friend with CF who walked me through using the nebulizer and is going to ask her CF friends here in Austin where they go. She goes to All Children's in Fort Worth. I am waiting for NJH to check my insurance before they will make an appointment but they said they are behind and it make take more than a week. Like I said, I don't cough that much and since the bronchoscopy I seem to be coughing even less but now I don't know if coughing less is a good thing or a bad thing. I have no shortness of breath and can play vigorous pickleball for three hours with no problems. I have only nebulized with Duoneb three times but it does not seem to make any difference in my coughing or body aches. Is it supposed to make you cough more and bring up more stuff? Since the doc said she saw pus in my lungs when she did the bronchoscopy I assume it would be better if I could cough it up, right?

OK, I went to the respiratory therapist and she told me that my doc does not prescribe any saline nebulizing (3 or 7%) for people who don't produce much sputum because of the risk of bronchospasm. Has anyone else been told this? I searched the forum and found where a doc wouldn't prescribe 7% because of the fear of bronchospasm but 3% was fine. I have no history of asthma, allergy and I am not short of breath. I have messaged my doc telling her that I would like to risk the bronchospasm and start with 3%. I am waiting to hear back from her. If she still refuses I will consider ordering it myself. I see Nebology was recommended on this forum. Checked the price, $42 for 60 vials 3.5% saline. Is that a good priced? That was more than I was expecting but Amazon seems to be worse. Just got my results from the gram stain and I am positive only for Haemophilus Influenzae, just started on a week of Levofloxacin.

Oh, no! I just read where Nebology requires a prescription! 🙁 Do all sites require prescriptions?

@sueinmn I messaged my doctor asking her to prescribe 3% saline and she responded back today that she will not. Her response, "We reserve 3% saline for patients that have significant sputum production. It will not be of any benefit for patients that are not producing sputum". I guess I will have to wait until I get a second opinion, whenever that will be. Still haven't heard back from the schedulers at NJH or Dr. McShane's office. It appears that most pulmonologists are backed up at this point.

I'm sorry you are having trouble getting in to see a new doc. Not surprising given the increased demand for paleontologists because so many people are having respiratory effects after long Covid.
Sue

You have found a good group with Mentors worth their weight in gold. You are asking the right kind of questions and requiring answers from the specialist…great.
Here is my input…I have MAC avium complex…and do not produce any sputum (at all) and rarely cough (actually only when I nebulize). I also go to NJH from Charlotte NC. I have a team of doctors here at home who willingly and gratefully work in tandem with the NJH team. I use the Aerobika with 7%saline (2vials) a day. This was decided last year when I was at NJH because although I cannot produce a sputum sample…one doctor on their team said the exercise (Aerobika)would be an advantage to my lungs…I believe the saline component was their wishful thinking that sometime I might produce a sample(they sent me home with mailer cups to send back a sample…hahaha) . My pulmonologist here at home who provides the RX for saline also sent me home originally with 3 boxes of vials of Ipratropium Bromide & Albuterol (.5mg/3mg per 3ml) as needed for wheezing and SOB(shortness of breath). I have used zero of that RX…only use 7%saline. I trust the doctors (not because they are doctors) but because they work with patients like myself 7 days a week…24 hrs a day…they have seen a lot. They explain…they answer my questions…they respect my thoughts even when I don’t know what I am asking or discussing. I only have SOB when I climb stairs or ride (hard) on my Peloton for over 4 miles. I let my body recover and use breathing techniques I have learned to calm my chest and HR down.

Here was the surprising news on my 6 month CAT scan follow up after last years NJH visit….my “broken glass appearance” in my lungs…had improved. So improved that they could see some other nodules that must have been obscured on the first 2 scans here at home. The radiologist (who if 3 or 4 are in the room and look at the same film…will undoubtedly not agree…) said I had mild progression…others said scan looked “good”🤷🏻‍♀️

Here is my gut feeling (which I will share with Dr. Daley in just over a week when I am at the clinic in Denver NJH for my yearly follow up…I believe that saline (salt) heals a multitude of ailments…and perhaps my nebulizing saline…my rigorous pushing my body with hard exercise, practice of breathing techniques, and lifestyle (diet), have all contributed to my improvement. In the beginning I had lots of chest pain, horrible fatigue, lost my voice and my hearing was impaired. I lasted on the cocktail of 3 (Azithromycin, Ethambutol, Rifampin) for only 6 months…but I believe that got me over the hump too.

Take care of yourself and beat your Influenzae. You sound strong, determined, and intelligent. I hope NJH has an opening for you soon.
Regina

Question

@cmi Thanks, Regina, for the kind words and sharing your story. I agree, this forum has been a God send. I messaged my doc back and asked what she meant by I "don't produce sputum". My chest often rattles when I lay on my back and makes me cough, after which I clear my throat often and feel as though I am swallowing sputum. I believe I am producing sputum, just not able to easily cough it into my mouth. I was overjoyed the other day after nebulizing, Acapelling and huff coughing that I spit out two small (1/2 inch) blobs of yellowish sputum. (Amazing what floats my boat these days 🙂 ) So I told her again I wanted to try 3% saline and asked her to clarify if she was just not recommending it or if she was refusing to prescribe it. Hopefully I will hear from NJH or UT East Texas next week!

I was doing pretty well with Saline 3%, guifenesin & flutter valve. I caught pseudomonas after being intubated during breast surgery last summer. Levoquin didn't get rid of it and now to make things worse, there is a shortage of saline...I suppose because of the supply chain issue
going on now. I managed to find a box of 0.9% but now I'm producing more mucus, coughing more and my oxygen saturation levels are falling. I also have MAI, Bronchiectasis and numerous lung nodules. Is anyone else having trouble finding the saline?
Please let me know if you are...
Thanks
Carol

Hi! I just found that my pharmacy will give 1/2 box and give more of my second 1/2 of 3 percent saline later at New Orleans area Walgreens. I was just confirmed with MAI and a New Orleans strain called Neworleansense/ porcinus. Hoping to get info about both on sites. I also have at least one cavitation nodule and bronchiectasis, etc. , scoliosis and other LadyWindermere type structure things too that set me up for this perfect storm! Pulmonary doc made appt with infectious disease doc end June but although a university hospital here sees MAC PATIENTS here the doctor’s nurse was so evasive about him being a MAC specialist on my questioning I don’t think I will persue. Sue, you were so nice to ask me to let you all know if second lab was Mac positive with contamination check and unfortunately it was. One other doc’s nurse was so rude and seemed angry at my questions about the experience with MAC that doctor had I decided to Rule out that doc too. It is a shame. Hoping to try insurance or pay out of pocket for NJH. Wonder how long you needed to be in Co your first visit? Good luck Champagirl! Thanks to all in this forum.