MAC Reboot - After 3 Years Post Meds

Someone on one of the ntm patient forums I joined (maybe this one) recently posted something her doctor said which made sense to me. He said that mycobacteria are like a stinky uncle sitting on your couch. He never goes away but so long as he stays on the couch, he doesn't cause trouble.

I assume the antibiotics (hopefully) put him on the couch!

Rits,I love this explanation, thank you. Mim

Dear Shari,
What do you mean by 'nebulise saline and do airway clearance'? One of my problems is although I cough I cannot bring up mucous. Have had 2 bronchoscopies and they also cleared the airways, from memory i think the word 'vacuum' was used.
Regards,
Mim.

My uncle is on the couch and I didn’t take antibiotics! Things just seem to happen with this disease!

@mimdavidson Hi Mim, Not Shari here, but..."airway clearance" is the term applied to using nebs, exercises, or devices (or a combination) to get as much sputum as possible out of the lungs to keep it from becoming a safe harbor for nasty germs to grow.
Nebulizing with saline solution (I use 7%, prescribed by my doc) thins the mucus to make it easier to get out. Some people are instructed to neb with a bronchial dilator medication depending on their specific condition.
Clearance devices include Acapela and Aerobika - they are little hand-held machines you blow into, and there is a flutter valve that causes the air to vibrate as it comes out of your lungs. This is supposed to break up the mucus clots. After a number of exhalations, you perform a series of "huff coughs" to bring up the mucus. Sometimes mine comes up right away, often it's stubborn, and I find myself coughing it up a half hour or more later.
Other ways of airway clearance include use of a percussion vest like cystic fibrosis patients have used for a number of years. Maybe @thumperguy can tell us more about this. Or manual thumping by another person. Or a process called postural drainage where you lay down in specific positions during or after nebbing and try to cough up the secretions.
Everyone here is different, with different symptoms, other challenges, and responses to treatment.
Here is my usual routine:
Neb with saline in the nebulizer attached directly to my Aerobika device. I used tha Acapela first, but Aerobika + nebulizer gets two things done at once. You will find people here using various strengths of saline - I have MAC in my cultures, and there is some evidence that 7% can inhibit growth of that particular bacteria, so that is what I use.
Pause every few minutes during neb to "huff cough" and try to bring up junk.
After neb, huff cough several times in the next half hour.
I do this once a day, twice if my chest feels tight or I have any evidence of respiratory issues like shortness of breath. OtherwisesI try to use the Aerobika by itself a second time later in the day. (My doc says up to 4 times a day if having a cold, cough, or asthma exacerbation- haven't had to do that yet.)
All of this was demonstrated to me by my pulmonologist, pulmonology nurse, and/or their respiratory therapist. I found that VERY helpful.
Did you get demonstrations and coaching from your doc or medical staff when they were treating you before?

I hope he stays there!

@mimdavidson
@sueinmn
Thanks Sue was going to answer this message but it got lost while writing.
But you covered everything I was going to say.
I do have a Hill Rom vest also but it's very hard for me to stay compliant but if I'm having great difficulty breathing I do.
Shari

Hi Mim,
I was diagnosed with MAC and bronchiectasis 15 years ago. I was on the "Big 3" for 18 months at that time. About 10 years ago I had a positive sputum culture, again, for MAC. Because I was pretty much symptom free with O.K. pulmonary function tests and CT scans, the physicians at Mayo Clinic decided not to treat. Fast forward to today...I am now having some symptoms (weight loss, increase respiratory illnesses, chest tightness). The MAC is still there (along with a few other lovely bugs!) so we have decided to treat it again. Back on the "Big 3" starting next week. Although it isn't pleasant, I've gotten through it before, so I'll do it again! Good luck to you.
Cindy

@mimdavidson Hello Mim! The recent outbreak of fires there in Australia has me very worried about some of our members who live there. People with mac /bronchiectasis can be super sensitive to smells and especially smoke. Are you alright? Do you need to evacuate?

Happy Holidays! Merry Christmas! Happy Hanukkah! And all of the celebrations held this time of year! I hope everyone had a nice week. Still waiting for the cultures to be finalized before the Dr. puts me on the correct medication. More tired than I have ever been and now starting to lose weight from lack of appetite. That didn’t stop me from eating the chocolate, esspresso, white chocolate buttercream Buche de Noel I made. It was SUCH a harrowing experience that when I got to the buttercream I said that if that didn’t turn out (to hide the multitude of sins of the chocolate sponge) I was going to just keep it for me and my husband to nibble on. The buttercream was beautiful and fortunately, made me look like I knew what I was doing! Hahaha! It was delicious. I hope you all had lovely feasts with yummy things to enjoy. Happy New Year soon and I wish us all good lung health for 2020! Carolyn