Therapy for anxiety dealing with Bronchiectasis

@damcipro Not exactly. I was on antibiotics for over 18 months, the last 6 of those daily (did not qualify for Arikayce trial at the time.)
By the 4th month of daily meds, my sputum cultures were all over the place, in a group of 3 one or two would be negative, the others positive - this happened 3 times. At the same time, the daily meds were ruining my health and life, I had no energy, was down by over 20% of my body weight, depressed, daily aches & headache. My ID doc & I, with concurrence of my pulmo, stopped the meds, BUT started 7% daily saline nebs ( they were just becoming the thing to do in US.)
Since then , my cultures twice a year, have been negative for MAC and pseudomonas. And once my asthma was under control, my cough improved and my CT shows the bronchiectasis is stable.

Hi Sue,
You are invaluable here in our community. You always generously share your practice and knowledge. Recently you mentioned in one of your postings that for 4 years you have not had an exacerbation. Looking back what made the difference from being very sick to exacerbation free in your case. I have had many infections this past year, now I am on azithromycin and brisupri both. I hope I can turn around without azithromycin soon. I understand it is pretty hard to nail down something, since we are always evaluating, tweaking our daily practice. But any idea would be appreciated.

Many thanks!

Ling

@wangling I am not sure how to answer this...let me say that I have focused on healthy diet, exercise, good sleep, and learning to "read" my body.
I just came in from a morning of strenuous chores, and my husband remarked that I looked very tired. That is my hint to rest - so no more extra chores for me today, just a good lunch, and maybe a little painting this afternoon after either a rest or a nap.
Whenever I feel "low" I immediately go on the offensive - more rest, more airway work, more nebs. Usually this prevents me from becoming ill. This is a huge difference for me - I used to try to "power through" and then I would crash.
Does your body warn you before an infection? How do you respond?

@sharonednaramsey Many years ago now, before 7% saline nebs, when I complained to my pulmonologist's nurse that airway clearance was taking too long and my lungs were never "clear enough ", she told me to "stop it."

She explained that I was actually "part of the problem" by trying too hard. She said after nebulizing albuterol, I should spend no more than 20-30 minutes using the Aerobika, postural drainage or huff coughing to clear. Also, not every session would be perfect, or even productive. Forcing continued effort was irritating my throat, lungs and vocal chords. Trying to get to "empty" would never work because our lungs are meant to be "bathed" in mucus.
I went home and followed her directions for a few weeks (while I was quite ill battling MAC and pseudomonas.) Wow! I still got out a lot of gunk, but the volume decreased dramatically, my sore throat went away, and I started breathing easier.

Maybe you can reduce tour stress by doing less?

I want to echo what Sue said about trying too hard. She helped me immensely with that comment, which she has made before. I have had nodular MAC since 2014. When I developed additional health issues, I began nebulizing 7 percent twice a day and using the Monarch vest twice a day. My sputum production increased accordingly and I had hemoptysis. Based on what Sue said. I went back to 3 percent twice a day with very little sputum and only use the vest four times a week. I do not use a breath-actuated nebulizer—so I nebulize for 10 minutes (albuterol) and 15 minutes saline and then stop. That’s what was recommended by Mayo. That’s pretty much it, although I blow into the Aerobika 10 times, 2 or 3 rounds, sometime during the morning and evening, as I do other things. I also use the Neil Med rinse once or twice a day, which has helped a lot. Focus on easing up a little and see if it doesn’t decrease your sputum production. It did for me but of course we are all different.

Thank you Sue. Learning to slow down is my problem. I just started to realize as we get older, to slow down is natural even if we don't have a chronic condition. I don't generally sleep well. It is the thing I am constantly dealing with. Without a good sleep, the body can't heal. Sleep should be a natural thing to people, but not me, even if I don't try, but surrender, sometimes it still doesn't work. When something is wrong or an infection, my heart starts beating fast and then comes short of breath. I have done so many tests about my heart. I begin to see maybe the racing heart is not related to the infection but related to when my energy level is down regardless if it is an infection or not. But I did have the sputum tests showing that I had an infection. Sometimes stupum did not show anything. It is murky for me to know what it is and what it is not. That is the reason I am afraid to get off of azithromycin. I even don't know if I have onset asthma or not. I use Breyna only because it helps me breathe better sometimes and keep the airway clearer to cough out mucus. I know most people don't need to use it. I am confused about not knowing the bottom line for me. I have scheduled a visit to NJH, hopefully I have the answer I want.

Ling

@wangling I think your consult with NJH is a great way to begin to get some answers.
I'm not sure how they operate, but maybe, since you are a poor sleeper, you can ask about a sleep study, there or back home.
I was diagnosed with sleep apnea in2024. Based on my desire not to use a Cpap, it took 10 months to get seen, then fitted, for a mouth device for apnea. It works for me! My sleep scores (as reported by my FitBit) have increased from 50-60% to 75-80% and I feel much better.
I really believe my better rest (plus the vaccine) kept me from catching Covid from my husband and daughter last month! I now wake up, usually feeling rested, before my alarm clock rings.

@juliea55 what is a breath actualized neb vs what you use ?