MAC + BX diagnosis has me gobsmacked

If your Bronchiectasis is just mild you may still be processing airway secretions normally and not building up mucus? And it seems many on this forum who have MAI say they are not able to produce much sputum with their airway clearance. The saline should still be beneficial. Not sure about all the rest at your stage.

To JSBlair
I am what I would call a 'newby' to this site and having been diagnosed with Bronchiectasis. I also was always told in the last 10 or more years by the doctor...'.you're healthy' per all blood work etc. etc. However a few years ago, maybe two and a half, I started having to clear my throat of a substance and told by the doctors it is 'Seasonal Allergies". I said " I don't have any the typical symptoms." Sometimes a dark yellow/green small glob would come up and the PCP Doctor said: "nothing to be concerned with" when I brought in a specimen. It wasn't until I lost a total of 35+ lbs when he, PCP, did a CScan and then called me into the office and as he sat next to me and held my hand he said "You have Bronchiectasis". Of course I didn't understand anything about that terminology, the problem, consequences etc. and the pulmonologist I went to wasn't any help....so onto NJH I went.
Yes, I am one of those who say it's time to 'open the bag of peat moss/potting soil etc' people. Have been involved with 'dirt' since a kid with helping my Mother in our family home landscape and then my own landscape. Nature has a way of talking to us and we now have to talk back!!!! 😉 Those of us that work in our landscapes just have to be extra, extra careful now....for sure I can't give up the joy and beauty it adds to my life.....or for any of us that love to grow and nurture beauty around us. Hoping we manage all that must be done.

How are you Irene.
When do you see the Cardiologist? I go today.
I feel fine, just trying to do all I need to do for myself, including those tasks related to BE and finding a best way to do all. With your posts and others it is helping. Thanks.
Have a great day.

Your story is very familiar! I was diagnosed almost 2 years ago thru a CT scan my cardiologist did. I was told then that a previous CT scan from 14 years showed nodules and I was never told. I became so angry about having bronchiectasis and MAC since I was exercising daily, eating good, no drinking or smoking. I never had or have much mucus with acapella device during daily clearance. I still do acapella twice a day and will for the rest of my life, hardly ever do I bring up anything. The only symptom I had when diagnosed was night sweats, some weight loss, fatigue and a little coughing, which I thought was allergies. I fought the meds. but gave in with pushy drs. Now that I’m nearing the end of my 18 months Im looking forward to my end date in May. Holding my breath my sputum stays negative. I also loved gardening, my hands were always in the dirt. I will continue loving my gardens but I’ll be wearing a mask when in the dirt. We still need to be able to do what we enjoy, we just have to be smarter about it. There is nothing we can do about how or where we got our bugs, we just need to manage our future. That’s how I feel today, some days I still mourn healthy lungs. Hang in there!

@jsblair Yes, the term "gobsmacked" quite possibly described how many of us felt when diagnosed!

And no, the doctors didn't miss anything in your annual exams - many people who are physically strong have "walked around with" undiagnosed bronchiectasis for years - until weight loss, fatigue, and/or a persistent cough led to imaging. In my case, it was thought to be "persistent asthma with seasonal bronchitis" - until I was so ill the doc was SURE I had pneumonia and sent me for a lung x-ray, which revealed evidence of bronchiectasis and widespread lung infection. When sent to the pulmonologist I was in a state of shock - and ended up on antibiotics for pseudomonas then MAC for almost 2 years.

The good news is, with airway clearance (incl 7% saline nebs a couple times a week) and healthy living, I have been off antibiotics for almost 4 1/2 years with no sign of recurrent infection. And, most days now, I only clear less than a teaspoon of mucus in 24 hours.

It sounds like your efforts may have knocked down your infection to the point where you are producing little mucus. I read your list - you may want to settle on just one mucus thinner and try just one airway clearance technique per day (I vary mine between huff-coughing after brisk walking or cardio, Aerobika, and post-yoga downward facing posture. )

Now let's talk about gardening. My MAC almost certainly came from gardening in soil contaminated by feral chickens and the flocks of birds we feed at my winter home in Texas. But I also have extensive gardens in Minnesota. Here is what my ID doc said to me "MAC is EVERYWHERE. You cannot avoid it without living in a bubble. So be prudent and do what you love. Bronchiectasis is a disease you live with."

So, I no longer use peat moss, I wet all soil before working in it to minimize inhaling particles, I leave the dumping of mulch, hauling of compost and sacks of soil to a young helper (easier on the body too!) Then I dig and pot and putter to my heart's content while wearing gloves, and if breezy, a mask. When finished my garden clothes and shoes stay in the garage until laundered. After more than a short session "in the dirt" I also shower when I go in.

According to my PCP, for people with chronic conditions like Bronchiectasis, i's really important to have an adequate BMI in case infection flare again.

Have you shed some of your fatigue, and regained some of your lost weight? And have you thought about how you might safely "play in the dirt" again?
Sue

Thank you for your kind responses! I'm very grateful to have found this group and have scanned through the old threads, picking up helpful tips along the way. It's encouraging to read the 'success' stories esp, from those who've managed the disease for decades! I bought a new showerhead (never knew it needed to be soaked in bleach every month!) and stopped getting water/ice straight from the fridge (makes sense that the water dispenser elements are rife w NTMs, gross). Making small changes where I can.
Not really feeling like exercising lately knowing I have an active lung infection.
Later this week I see the pulmonologist to go over the bronchoscopy results (I'll ask about nebulizing!) and next week, a meeting w infectious disease doctor. Then things hopefully be more clear.
Haven't planned on returning to gardening, right now it's too stressful! For the time being, I'm swapping that hobby with good ol' bacteria-free reading! Many books to catch up on....

Yeah I know the feeling about no longer being able to garden. Last year I gardened using a mask. However my next CT showed a little worsening. My pulmonologist made me promise to stop gardening all together. She put it into my patient file that I agreed!

Sue, I find it very interesting in your reply you stated only trying one mucus thinning item. Have you had experience or heard of this possibility being better than multiple mucus thinning treatments? I know and understand you’re not a Doctor, but I believe experience is a wonderful teaching tool. Furthermore as far as healthy diet, do you know of any particular literature or website to get some guidance on on foods to have while fighting Bronchiectasis.. thank-you. God Bless all you Mentors for the help you provide us.

Actually, I use Mucinex la and NAC capsules for mucus thinning. If my mucus feels "thick" I also drink a cup or 2 of Breathe Easy by Traditional Medicinals.
As for diet, my concern during active infection was to get enough calories to maintain my weight. As far as anything special, I'm not aware of any site.
You need to remember that bronchiectasis is not something we fight, it's a condition we live with. When I was really struggling with low appetite from infection, I was advised to eat high- calorie nutrient dense foods. Otherwise as far as I know just a healthy diet