Treatment Guidance Please...Bronchiectasis/Asthma/Reflux

@narelled23 Perhaps I am missing something in the diagnostic history above, but I do not see the NTM diagnosis?
Your history reads much like mine - long-term difficult to treat asthma with bronchiectasis. Even after antibiotic treatment, I never felt well until we got the asthma controlled about 2 years ago. It was a concerted effort by the Pulmonologist and me to find the right combination of medication (Symbicort twice a day, Singulair once a day), 7% saline, airway clearance, exercise and deep breathing cycles. That ultimately meant reducing my use of 7% saline nebs to 2-3 times per week, using the Aerobika for airway clearance once a day, and huff coughing or deep-breathing cycles for the other session.
As for the volume of mucus you are experiencing, perhaps it is an irritation response to vigorous airway clearance? I have learned that if I try to clear "every last bit" of mucus from my lungs I produce more and more - to the point where I constantly feel like I am drowning. And unless I am fighting an exacerbation (illness) I do not need 7% saline daily to help clear my lungs. Perhaps there is something to the recommendation from the respiratory therapist?
I understand that the Lung Matters protocol is very specific, but as with every other form of treatment, it is not "the only way" because each one of us is living with a different version of lung disease and our own unique body. In my case, the less rigorous regimen has kept me healthy for over 2 years and counting. Unless I have a respiratory virus, I only have about and ounce of mucus per day - yet my lungs sound clear with a stethoscope.

Sue, just to clarify...I am barely aware of having asthma ... they had to give me an asthma provocation test to be sure I actually did have asthma at all... and apart from the occasional temp/exercise induced cough I am unaware of it. I generally don't wheeze. So how us asthma a problem for me other than being diagnosed with it. Frustrating!

You sound like me (years ago) "and apart from the occasional temp/exercise induced cough I am unaware of it. I generally don't wheeze. "
Yup, I had asthma, but I was very active and a runner, so I had well-developed lung capacity that "masked" the asthma except under certain conditions - swimming, high heat & humidity combined, dry very cold air, or whenever I got a cold. My lung capacity was always fine when checked in the doctor's office, until one day when I was tested during a bout of bronchitis.

Hence for many years, probably from early teens to my 40's, the asthma was never treated. After it was diagnosed, I used my albuterol as little as possible because it set off a racing heart and tremors, feelings I detested. I always had allergies, as a child I had significant exposure to asbestos particles, and in my teens and 20's to lots of paper dust. During adolescence and early adulthood, every cold or "bug" turned into an ear or sinus infection, bronchitis or pneumonia.
Again, my conditioning as a runner allowed my to mostly ignore the asthma - until I couldn't. (By the way, the same conditioning allowed me to mostly ignore my increasing hip and back pain - until I couldn't, leading to new hips in my early 50's, but that is another story.) According to my original old-school pulmonologist that was the "perfect storm" that led to developing Bronchiectasis, MAC & Pseudomonas.

I am so glad we always took our daughters' asthma more seriously than my own - perhaps they will be spared the issues I now face.
Sue
PS Looking forward to meeting my newest pulmonologist next month - the "old guard" in our clinic have all retired. I will get a fresh set of eyes looking at my overall lung situation.

I’d encourage you to work on getting the post nasal drip and reflux under control as well as your asthma. It sounds like what you had been trying didn’t work for you. I’ve only been diagnosed a bit over a year, but had problems with a couple types of cough much longer.

I had a couple small nodules found by an urgent care doc 3 years ago. The f/u CT a year later was much worse with trees in bud, ground glass, etc and I was thought to have MAC and was referred to a local pulmonologist who prescribed Azelastine for the horrid episodic coughing since he thought it was PND and he found I also have mild asthma. He started Stiolta and albuterol for asthma, avoiding steroids due to possible MAC. The Azelastine for post nasal drip helped the horrid cough a lot, but the little nagging, persistent cough remained along with some hoarseness.
I went to Mayo 15 months ago, was diagnosed with bronchiectasis and cultures were negative, I started on albuterol nebs, Advair and a triple nasal spray with Ipratropium, antihistamine and steroid. The steroid inhaler and spray helped so much! The nagging cough was gone with 24 hours and after aggressive treatment by Penn ENT with nasal meds, including sinus washes with steroids , my sinuses, including persistent frontal sinus issues, are finally better controlled and my hoarseness is only intermittent now.

I tell you this because you’re following the Lung Matters protocol and there is some good info there, but just saline rinses didn’t work for my sinuses nor did avoiding steroids control my mild asthma. I’m a retired RN and knows the problems with steroids, but for me, the benefit has outweighed the risks. I posted about the meds helping my cough and sinuses there a couple times and the posts were taken down quickly since they aren’t in that protocol. People are different and one approach may not work for everyone.

Stiolta relaxes the airway and is used primarily in COPd patients. I was started on that by the first pulmonologist I saw once the CT with trees in bud , etc were found. I actually developed bronchiectasis while I was on it. That doc went on medical leave prompting my Mayo visit. The doc there said it was primarily for COPD and switched me to Advair (have mild asthma) once MAC cultures were negative.
Have you contacted your doc and had a sputum culture since the increased production. Is it discolored?

You sound like me (years ago) "and apart from the occasional temp/exercise induced cough I am unaware of it. I generally don't wheeze. "
Yup, I had asthma, but I was very active and a runner, so I had well-developed lung capacity that "masked" the asthma except under certain conditions - swimming, high heat & humidity combined, dry very cold air, or whenever I got a cold. My lung capacity was always fine when checked in the doctor's office, until one day when I was tested during a bout of bronchitis.

Hence for many years, probably from early teens to my 40's, the asthma was never treated. After it was diagnosed, I used my albuterol as little as possible because it set off a racing heart and tremors, feelings I detested. I always had allergies, as a child I had significant exposure to asbestos particles, and in my teens and 20's to lots of paper dust. During adolescence and early adulthood, every cold or "bug" turned into an ear or sinus infection, bronchitis or pneumonia.
Again, my conditioning as a runner allowed my to mostly ignore the asthma - until I couldn't. (By the way, the same conditioning allowed me to mostly ignore my increasing hip and back pain - until I couldn't, leading to new hips in my early 50's, but that is another story.) According to my original old-school pulmonologist that was the "perfect storm" that led to developing Bronchiectasis, MAC & Pseudomonas.

I am so glad we always took our daughters' asthma more seriously than my own - perhaps they will be spared the issues I now face.
Sue
PS Looking forward to meeting my newest pulmonologist next month - the "old guard" in our clinic have all retired. I will get a fresh set of eyes looking at my overall lung situation.

I. too. have been confused in this journey with Bronchiectasis (BE), diagnosed 10 years ago. Not until I got to National Jewish Health in Denver 8 months ago did I begin to get the BE under control.
It is my understanding that you can get an in-person visit with NJH Bronchiectasis Department, and then continue treatment remotely.
Since NJH is the leading Pulmonary Hospital in the country, I feel I am in the best hands possible.
Like Sue, I could not tolerate Albuterol, heart races using it. So my pulmonologist switched me to Levalbuterol.
My regimen twice daily, am and pm, is Levalbuterol inhaler, followed by 7% nebulized saline, followed by Symbicort (lowest dose). Midday I lie on my back, do vigorous exercises, manual percussion, controlled breathing, huff coughing, all of which clears my lungs of green liquid, then follows coughing up mucous; I am assuming this is clearing my lungs of Pseudomonas.
Levalbuterol opens the airways. Nebulized 7% Saline they say is a game changer. Symbicort helps curb coughing and decreases irritation in the airways.
NJH says the best way to treat BE is Airway Clearance, Airway Clearance, Airway Clearance! They have a lecture series once a year that you can join online. With a decrease in lung function of 25%, perhaps the right pulmonologist along with the right treatment can stop further decrease.
Good luck. Let me know if you have any questions......will be happy to answer.
Pam

Hello, I have MAC and recently, I have been coughing uncontrollably with mucus. I recently had Covid and the problem appeared to get worse after I tested negative.
I have tried the Azelastine, in the past; it helps some, but not all of the time.
What is Stiolta?
I also cough a lot after I eat. Does this sound familiar to you? TUMS can typically calm these episodes.
I was diagnosed with this condition in 2015.