How do we distinguish mini flares from total exacerbation?

This is a very good topic and question to bring up, Jill. You are really going through it. My experience is not as severe but I have had the same question and learned some things that changed my approach.
I had two exacerbations in the last few months. Both were discovered with very mild scratchy throat, fatigue and somewhat more coughing and sputum. Both times I was swabbed by my BE docs and each one came back positive for a different virus. I was prescribed a quick taper of Prednisone both times since I also had wheezing, and Prednisone resolved it. The first time happened to be a couple days after the regular CT scan and they could see increased inflammation.
I really did not understand until these experiences how important it is to reach out to the docs even when symptoms are relatively mild. In my pre-BE life I would have just ridden out a mild cold, which is what these felt like. But with BE, if you've got doctors who are familiar with BE, they want to do everything possible to help you prevent or slow any progression and that includes assessing exacerbations quickly, treating if necessary, and making sure you & they are following up.
I really can't stress this enough: don't try to ride it out. Let your doctor know. This was a new insight for me.
I attached here a screenshot of the more precise and generally used definition and criteria for an exacerbation.
It comes from this article:
https://pmc.ncbi.nlm.nih.gov/articles/PMC7121148/
I wish you the best in struggling to manage this beast of a condition.

I asked my doctor to put in a standing order for sputum samples at my local lab. This way I can take a sputum sample anytime and have it tested. It eliminates me having to make appointments with the doctor every time I feel like I am getting an exacerbation of symptoms. I also get treated quicker with the antibiotic and i get better quicker because I am able to stay on top of it like this.

I always have a problem deciding if it’s exacerbation and react or wait. But I also understand if your respiratory culture comes negative but you have a virus ( now they swab only for three not like before for the whole panel) you will not get an antibiotic. Am I correct. My doctor does not give standing order for a culture. Besides most of the time I would get sick , guess when, on the weekend or holiday and had to wait to contact any doctor.

@jillcrawford I think distinguishing between the two takes each person several years of learning their own body and the stage of their disease. In my case, it was thrust upon me by the great pandemic in 2020. I had just stopped antibiotic therapy and involuntarily changed pulmonologist. My ID doc was assigned to the hospital for the duration and unavailable. I was NERVOUS!

The first time I got a respiratory infection, I had a virtual visit with my new pulmonologist - she wasn't even set up for video yet, so was just a calming voice on the end of the phone. Her approach was to ask "What does this feel like? Is it the general tiredness, achiness, runny nose, etc of a cold or is it more severe? Did you have a negative Covid test? Is it in your lungs or you head? Do you have a fever or nausea?"

Then she offered this advice "If it feels like a cold, rest, drink extra fluids, double up on your nebs - levalbuterol, budesonide and saline, and your airway clearance for 3 days. If it is no worse, continue for a week. If it is worse, call me & I will prescribe predisone and an antibiotic." It worked - it was a cold, and went away.

The next time, it was a true exacerbation - I felt it in my lungs first and started precautionary treatment right away. When I called her, she ordered the prednisone and an antibiotic, told me to wait 3 days to see if I improved and start them, or start immediately if I got worse. I got worse, got tested for Covid (negative), went through the round of meds and had to call again - she repeated the treatment with a different broad spectrum antibiotic and it worked. That was in late 2020, and was my last serious exacerbation.

After the office reopened, we met, she changed up my asthma meds, and we put the "plan" into my records with standing orders for the meds in case a different doc was covering for her. She also told me to take them along when we travel, and start them according to plan if I could not contact her.

My pulmonologist has now retired and I have a care team of two great pulmonologists. We have the same plan in place, and we have used it once - last year when I had Covid, and it was mostly a precaution.

I strongly urge everyone to make a plan with their docs.

Please note, at no place in this is a sputum culture - when in an active exacerbation, waiting is not the answer. But after the antibiotics I am supposed to submit my 3 samples.

@liliana Why won't your doc issue a standing order for sputum cultures? I have had them for years.

Hi Jill. Here is a bronchiectasis action plan that might be helpful. Good luck to you.
https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/ActionPlanEnglish.pdf

Thank you… helpful

Will try that

Thank you all I hope my doctor agrees to cooperate. He sort of old school but otherwise very good. I am going to copy your advice and show it to him if that’s OK regards, Jill.

Just to add to this excellent advice—something my pulmonologist once told me: Our lungs are constantly taking things in and out as we breathe, much like how smells travel through the air. One day we might feel worse (like with increased sputum), and the next we might feel better. That’s why it’s so important to step up our routine at the first sign we might be coming down with something.

Stealing this for the ABC's of Mac & Bronch discussion! Thank you.