How important/helpful is a respiratory therapist for someone with MAC?

I'm fighting the good fight as well. Would like to check out this DR & see if he can be of help!

We have no respiratory therapists near me (I'm in NZ) so I've not been given respiratory advice, but I know for me, nebulising with 7% saline and airway clearance that I've learnt from support groups and YouTube have helped me. I did have to go on the Big 3, but that was because I'd lost a lot of weight and coughing up blood. Not very helpful for you though, sorry!

YouTube is definitely helpful as are support groups. Because of these things I now know, whether I eventually go on the Big 3 or not, I'll be doing airway clearance for the rest of my life, and I've learned a lot about doing it more effectively. I so appreciate that!

But I'd certainly love an in-person consult with a respiratory therapist if I can manage to get one.

Dear Annagh, you should call doctor’s office and ask them about how to see the respiratory therapist at their department if they have one; and what else they do for NTM patients. R. Therapists work in the hospital, often times, with inpatients and may only have a day or two with outpatients.
I would highly recommend seeing one even if you would have to stay overnight near the hospital to make it worth the long drive. Also, if they have a large NTM department, your doctor may want to evaluate your lung function to determine if you need inhaled meds to help deliver the saline to the small bronchioles.
I had all of that done when I went to NJH and found that Albuterol puffs helped open the smallest bronchioles to clear up thick mucus plugs lodged there.
I wish you the best.

Hi annagh,
I read your note, I saw Dr. Winthrop in this September, He seems to me very much research focused. Which means he is on top of the NTM stuff. He is the one who suggested I should continue to use Albuterol and Aerobika for my airway clearance. He also recommended that I join the bronchiectasis registry. Now he is tracking my mucus regularly. Did you have a chance to see him yet?
Take care!
Ling

Yes. After I saw a video in which Dr. Winthrop discussed wait and watch, and my pulmo was insisting on the Big 3 immediately, I asked for a referral. I first saw Dr. W in May and got a much more thorough explanation of my situation, and the option of being in one of his clinical trails. I'm now halfway through the chlofazamine trail, and think there is some improvement, whether it is the drug or the diligent nebulizing, Aerobika and walking. He's very friendly, open, and I trust him. He said if this knocks my MAC down a bit, waiting and watching may be an option. I figure being in a trial provides as careful "watching" as I can get! And even if it doesn't benefit me directly, hopefully it will help all of us down the road. Unfortunately, he's about 5 1/2 hours away— but worth it to me!
All best,
Anna

Glad to hear that you have some improvement, I believe all the things you do and the drug trial contribute to this. Other people in the future would benefit from the trial you are in, which is great. Like the registry I am in to keep track of my sputum, I don't know what I can benefit from it, but I believe it will help the research for future development.
Best luck!
Ling

There seems to be a big gap in best practice medicine in getting any Ntm patient refered to a respiratory therapist, I have Mycrobacterium lentiflavin. Recent dx of pseudomonas Oryzihabitans. Both not common. Off to JNH very soon. This group is a good for getting your questions answered. With Covid demand has increased for respitory therapists. Good luck, watch the videos.

My pulmonologist thinks it would an excellent idea to refer me to a respiratory therapist, but there are none in the area. When I search "respiratory therapist" all I get are job openings! If someone were looking for a career opportunity in the health care field, I think is the need is great and will only increase.