Watch and Wait Protocol?

Upon my diagnosis and while "waiting" for cultures and results, I formed a 10 cm cavity in my upper left lung within 30 days. The doctors that specialize in this disease and on the video from http://www.aboutntm.com suggest treating asap. Once the damage starts, its almost impossible to reverse. Once I added inhaled Arikayce, I was able to shrink the cavity to 4 cm but that's the best its gotten in 6 years...........all because of waiting.

Greenly, is part of your "watch and wait" protocol daily airway clearance and nebulizing with (lev)albuterol and saline? For many of us, these are the foundation of our treatment, regardless of whether we take medication. Both bronchiectasis and MAC are progressive, so it is important to interrupt that progression! Best of luck.

I can understand in a way why he said don't read all the side effects....however I agree with you in that we must be as knowledgeable as possible and that requires educating ourselves and then we have the ability to make informed decisions in consideration of what we know about ourselves and our lives.
Barbara

I would imagine, as with you, I, my relatives and friends, many others I have mentioned my having Bronchiectasis to have/had never heard of it. Even some medical people have never heard of it and further, sadly, many pulmonologists don't know how to wisely treat patients with Bronchiectasis. Hopefully more pulmonologists begin to take a sincere interest in our chronic problem.
Barbara

That must have been disappointing...the forming of a 10cm cavity while waiting for culture results. Do you feel you had symptoms of Bronchiectais long before your diagnosis? My only symptom was weight loss however I did need to clear my thoart of a substance throughtout the day which I feel was/is related to hiatal hernia/acid reflux. I had my first CScan in 8/2022 (original diagnosis date) and a second in 10/2023 and apparently no cavity. Having another this October 2024 and pray all is still under control during a continuation of "watch and wait."
I feel good and energy level is fine along with a good appetite...so we shall see 'what is what' in a few weeks.
Barbara

I was diagnosed in 2021. I have no symptoms but have Bronchiectasis and MAI. My doctors did the same thing. I also do not want the treatment because I am afraid of it , when the doctor told me that he people that have gone 20 years plus without taking the medication I am very hopeful that I can do that also. I would have to be really really bad off and to take the medication because I am leery of it I continue to run every morning and religiously do my airway clearance. So far that has worked for me to stay healthy. Everyone is different and has to do whatever they feel is right for them

I had weight loss and a cough

Watching and waiting for 13 years...it's do-able. And while my NJH doctor would rather I have part of my left lung removed, he's willing to listen to what I know about my body - mainly that two trials of the Big 3 left me a mess and unwilling to take them (I do understand that some folks have great success with those drugs. I just wasn't one of them). And I agree, do the healthy things, nebulize, exercise, and eat a healthful diet.

I don't/didn't cough so to speak as much as "sucking/drawing" up the substance/mucus out from my throat. This need to remove the "mucus" from my throat is a constant all day thing, especially after eating. I have finally been able to put on a few pounds.
Do you still have the cough?
Barbara

I do still have a cough but its not like it was in the beginning. Now that I've been treating this, I'm much better than I was in the beginning and the first 2 years. The meds have kept me stable and have given me improvement. Its not worth the risk to me to watch and wait since the damage is so much worse than any side effect from meds.