New to MAC and considering treatments options: What did you do?

I recommend going to National Jewish Health for a second opinion. They have world class physicians who are renowned experts in NTM. If not there, UT Tyler is another center of excellence.

Well, I was absolutely a skeptic about 7% saline at first - it just sounded too simple. But... I am a fervent convert, and it may just have been the best thing I have done since diagnosis. For the first time in roughly 15 years, I have had upper respiratory infections (3 now) that did not evolve into either bronchitis or pneumonia. I credit the 7% saline keeping my lungs clear of mucus so the germs cannot take up residence. If I were you, I would (seriously) find myself a little battery powered hand held nebulizer and start the 7% saline routine. It takes about 10-15 minutes morning and evening. You can even do it while you watch the news or read email. Don't let all the descriptions of complicated cleaning routines scare you! I soak mine in hot water and a drop of dish soap, rinse & air dry. Once every week or 2, I boil it in a saucepan (most other people here seem to use a microwave sterilizer bag) Either one takes about as long as it takes to load or unload the dishwasher.
Maybe @thumperguy can convince you...
Sue

No Bronchiectasis or infection

No Covid (or if I had it, it was so mild I did not know I was sick)

I had a CT Scan prior to having an Atrial Ablation for Paroxysmal Atrial Fibrillation and some small nodules were seen in my lungs leading to further follow up.

This last visit with the Pulmonologist scheduled the next follow up CT for January.

I do not smoke. I am an active person and in my opinion I follow a good diet. My husband has Chronic Renal Failure (no dialysis thank goodness) and I follow a renal diet for him and by default myself. I just add some salt to my food if needed.

I think I could be comfortable with the wait and watch approach if I get a second opinion from someone who will listen to my concerns and answers my questions without a dismissive go home and don't worry about it. I need more reassurance and info about my current status than that.

I think my focus right now will be to learn all I can about MAC and find a second opinion wherever that my be.

Any further suggestions or information are welcome and appreciated! Thank you again.

Been 5 weeks or so on this 7% saline. Now I have this morning cough out of yellow mucus that goes on for about an hour. Is this normal? Not sure if it's helping & why I'm having these early morning cough-a-thons. Any ideas?

Hi cwal,

Maybe I'm misinterpreting your post, but if you have no infection, why are you trying to learn about MAC infections? Also, how did they determine you aren't infected? Have they determined the cause of your nodules? Per my understanding, nodules = infection (MAC or otherwise). How did they determine you have no infection despite the presence of nodules?

My lay person theory is that the mucus has finally penetrated way deep into your lungs, and you are getting rid of stuff that has been down there a while. This happened to my on .9% saline, then again on 3% and finally on 75. Now if I skip a week, my cough diminishes. Then when I start the saline again, I go through a good week of excess coughing, finally bringing up thick, colored mucus.

If you said you were coughing up thin, clear mucus I might think it was just the 7% saline causing irritation, but the fact that it is colored means there is something in it...

Are you on antibiotics too?
Sue

Yes - I'm on the Big 3 and Arikayce too. Doing all I can but this has been a real fight!

There is no doubt that dealing with MAC is a big fight! Many of us have been through it, so feel free to keep asking questions.

4 years ago when I started the Big 3 it was difficult to believe that life could ever feel normal again, but with the help of my docs, my family and the great folks on Connect I am back living my best life- with a few extra routines and a little slower but...

Hang in there. We're here for you.
Sue

Your words mean quite a lot as not many don’t realize what MAC is all about. I need to get rid of this!!!

My friend, this is hard to hear, but you are at the beginning of your marathon. I'm not sure of your age or health history, but this is going to be your life for a year or so. Your symptoms should gradually improve but MAC took a long time to settle in your lungs and is going to take time to leave too.

I sense that you, like me, are not always patient when illness messes up your plans. Please be kind to yourself. If family and friends don't understand why you are not up to your usual activities, explain and think of other things you might do instead.
Try to explain what's going on - when my young nephew didn't understand I explained it was like when his friend broke his leg - cast, rest, therapy, crutches ...except mine was invisible. Older friends might get a comparison to chemotherapy- the meds make you feel worse in the short-term in hopes of being healthy long-term.

What is the hardest thing for you to handle right now?
Sue