Thoughts about “the watch and wait” approach.

Do you know what strain? I would get another opinion from an infectious disease doctor and another pulmonologist. Not all MAC is slow growing. My left upper lobe grew a 10 cm cavity in it within 30 days of "waiting". Then you're looking at an even longer journey. The antibiotic treatment along with the nebulizing now can put you ahead of this.

What type of lung clearance do you use? I am in the same boat as the person above. Did your Dr. prescribe the lung clearance or is it something you did on your own? Thank you

My first pulmonologist did prescribe albuterol for me to nebulize before the saline but it made me very jittery. When I complained about it, and told her I wasn’t using it in the evening because I had trouble getting to sleep later, she prescribed levalbuteral which was a little better but I still quit using it in the evening. She was insistent that I use it twice a day. When I went to NJH, one of their lung functioning tests included testing the effect of albuterol. It made about 12% difference in opening up my airways, which is not much. The doctor left it up to me about whether to continue or not to use albuterol, but it seemed he didn’t think it made enough difference. He did say that I might want to use it before I went out to exercise or hike, etc, but it was only a suggestion not a recommendation. He told me that I have no problem getting air into my lungs but my problem is a lot of trapped air that doesn’t get exhaled.

I don't use albuterol or levalbuterol nebs before saline nebs. But I do have a daily long-acting inhaler which I use faithfully morning and evening. My pulmonologist also recommends using it 15 minutes before nebulizing saline/airway clearance if my chest fells tight. I have asthma as well as mild-moderate bronchiectasis.

@kwi raises a good point - for many of us, the problem isn't getting sir in, it is that our damaged airways don't effectively push air out. I have learned over time that I need to consciously exhale fully because my lungs no longer do it naturally - pursed lip breathing helps me do that.

What is your current airway clearance routine?
Sue

My Pulmonaligist prescribed compression vest, which I do 3x's a day, with albuterol inhaler or nebulized, depending on how thick I feel my mucus is. She also prescribed Flovent inhaler 2x's a day and 600 mg of an expectrant each day. My ENT prescribed Azelastin 1x a day and nasel rinse 2x's a day. I work closely with my Infectious Disease Specialist on the wait and see part. I had to be on some pretty serious antibiotics when I was first diagnosed, Tobramyicin. I was on that for about a year and a half with some pretty severe side-effects, both short-term and long-term. When I notice increased coughing and thickening of my mucus, I take zinc and D3 1x a day, everyday until I feel better. I also make an anti-inflammatory hot drink of water 1/4 c. of lemon juice, 2T. raw honey, 1/4 t. each of Tumuric, Cinnamon, and Ginger. I do yoga everyday. I walk as much as I can. I stopped eating refined sugar, and lost 40 lbs. Keep stress to a minimum and test to a maximum. I was having full-blown infections every 3 months for the past 3 yrs, until I've started on this regimen. I have been antibiotic-free for a year now. It's a lot of time and work, but it is so worth it. I think you just need to have a good team of doctor's to work with, and pay attention to your bodies warning signs, and don't delay or put off treatments. Praying for us all. 🙏

I was using inhaled Albuteral before nebulizing with saline, as recommended by my pulmonologist, but I did not experience a difference in the amount or ease of sputum clearance. When I reported to my ID he agreed that if I didn't feel it was helpful I could stop using it. Pulmonologist concurred. Like with so much of this, it's an individual thing, and each of us has to pay attention to our bodies and responses.
Anna

Yes, Avium. This was determined with fluid from a bronchoscopy.
I am thinking about going to Mayo Clinic for a second opinion.

Right now I'm on albuterol prior to the 3.5%nebulizer treatment twice per day.
My condition was found accidentally from another injury which required a CT scan.
He does not support antibiotic treatment, I'm scheduled for another CT scan at the end of February.

Sue, can I ask what medication is the daily long medication you use before nebulizing saline?

You can watch and wait but do not be shy about going to your doctor if you start to go downhill. The descent can be fast, and the climb out of the hole can be painful, steep, and months long. Try to nip anything that is happening in the bud. I have learned the hard way not to be a hero or afraid to look like a hypochondriac. I find it helpful to monitor myself. I watch my pulse ox, and when exercising, I always have a heart rate monitor. With me, at least, bad numbers foretell a stretch of illness. My pulmonologist is not interested in my numbers so much, but if the numbers coincide with even a small change in how I feel, I know it is time to make an appointment.