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DiscussionNewbie question - Have you been told you should not neb with saline?
MAC & Bronchiectasis | Last Active: May 28, 2022 | Replies (10)Comment receiving replies
Replies to "@sueinmn I messaged my doctor asking her to prescribe 3% saline and she responded back today..."
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
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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