I feel fine! But...

Posted by bronchiectasaurus @bronchiectasaurus, Jun 21 7:47am

I was diagnosed with "mild bilateral bronchiectasis" May 4, after 2 months of severe coughing. Since then I have been nebbing saline (now 7%) 2x daily with an Aerobika, doing saline nasal lavage 1 to 2x daily, and exercising (long bike rides, about 100 miles a week).

I feel great now! So great that every day I ask, "do I *really* need to do all this nebbing and cleaning?"

I answer, "you are lucky to have mild bronchiectasis. If you don't take care of it, you could develop a MAC/NTM infection. Your lungs are vulnerable to everything now, salinifying them daily protects you from whatever's going around that will disable you for weeks or months. Don't you remember what it was like 2 months ago??"

So I continue my daily lung care routine, wondering if I'm crazy. Anyone else think like this?

For the record, my local medical system barely registers bronchiectasis. The pulmonary specialist they assigned me was for monitoring granulomas and nodules. Because I have nodules I wonder if I have "nodular bronchiectasis," but my specialist doesn't even know what an Aerobika is. I'd really like to go through my CT scan with an expert, but the closest center is hours away and more importantly doesn't accept my insurance (I'm on Illinois Medicaid).

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@bronchiectasaurus "...So I continue my daily lung care routine, wondering if I'm crazy." NOPE! You need to continue a routine, however, maybe not as rigorous as you do now. First of all, two months is a very short time - keep it up for a while!
5 1/2 years after antibiotic treatment, with chronic asthma and allergies lurking in the background, here is how I GRADUALLY streamlined my routine with the consent of my pulmonologist who is an expert in the field:

Nasal Lavage
First, my ENT told me to only use nasal lavage during an upper respiratory infection and let nature take care of it otherwise (she works as a team with my pulmonologist.) So I put that away. I use a nasal spray (from the doc - not OTC) to help manage my allergies.

Saline Nebs
Did you know all of that saline stays in your lungs for a while (sometimes a couple days.) I found it out by accident when I left my nebulizer behind on a short trip, but kept up airway clearance - I could taste the salt in my mouth the whole weekend.
With that in mind, and the blessing of my pulmonologist, after over one year with no exacerbations, I cut back to one 7% saline neb per day (but still 2 airway clearance sessions.) Over the next 2 years, we gradually cut it back to 2-3 times per week, and for a time this winter stopped completely. But now it is allergy season, and I am doing it 2-3X week again.

Airway Clearance
Twice a day, like clockwork. But it might look different than most. In the morning I use my asthma inhaler, then do either gentle yoga or my PT for 2 shoulder injuries and pain management. Both involve moving and changing positions, which loosen my mucus enough to huff it out - usually without my Aerobika, but I use it sometimes. Later in the day I either walk or do some vigorous yard/house work. Usually midway through, I have loosened enough to spontaneously cough up whatever mucus remains. My neighbors are accustomed to seeing my "cough break" halfway through lawn mowing or my walk, and no longer come over to see if I am OK😅)
Before bed, if I feel I am not fully clear, I do a few rounds of breathing/huff coughing.

Caveat: At the first sign of a respiratory exacerbation, however mild, I go to twice a day budesonide & saline nebs and double down on airway clearance. I even made it through Covid last September with only needing oral steroids for a few day!

That's it! Aside from cleaning any equipment I use. This is not the answer for everyone, but with mild, stable bronchiectasis and no exacerbations, it is a routine that works for me.

PS I'm not sure where you are in Illinois, but my friend has found a bronchiectasis specialist (not in a center) who practices in Decatur & Springfield - I can get details for you if that is somewhere near you. There are also specialists in Champaign/Urbana

REPLY
@sueinmn

@bronchiectasaurus "...So I continue my daily lung care routine, wondering if I'm crazy." NOPE! You need to continue a routine, however, maybe not as rigorous as you do now. First of all, two months is a very short time - keep it up for a while!
5 1/2 years after antibiotic treatment, with chronic asthma and allergies lurking in the background, here is how I GRADUALLY streamlined my routine with the consent of my pulmonologist who is an expert in the field:

Nasal Lavage
First, my ENT told me to only use nasal lavage during an upper respiratory infection and let nature take care of it otherwise (she works as a team with my pulmonologist.) So I put that away. I use a nasal spray (from the doc - not OTC) to help manage my allergies.

Saline Nebs
Did you know all of that saline stays in your lungs for a while (sometimes a couple days.) I found it out by accident when I left my nebulizer behind on a short trip, but kept up airway clearance - I could taste the salt in my mouth the whole weekend.
With that in mind, and the blessing of my pulmonologist, after over one year with no exacerbations, I cut back to one 7% saline neb per day (but still 2 airway clearance sessions.) Over the next 2 years, we gradually cut it back to 2-3 times per week, and for a time this winter stopped completely. But now it is allergy season, and I am doing it 2-3X week again.

Airway Clearance
Twice a day, like clockwork. But it might look different than most. In the morning I use my asthma inhaler, then do either gentle yoga or my PT for 2 shoulder injuries and pain management. Both involve moving and changing positions, which loosen my mucus enough to huff it out - usually without my Aerobika, but I use it sometimes. Later in the day I either walk or do some vigorous yard/house work. Usually midway through, I have loosened enough to spontaneously cough up whatever mucus remains. My neighbors are accustomed to seeing my "cough break" halfway through lawn mowing or my walk, and no longer come over to see if I am OK😅)
Before bed, if I feel I am not fully clear, I do a few rounds of breathing/huff coughing.

Caveat: At the first sign of a respiratory exacerbation, however mild, I go to twice a day budesonide & saline nebs and double down on airway clearance. I even made it through Covid last September with only needing oral steroids for a few day!

That's it! Aside from cleaning any equipment I use. This is not the answer for everyone, but with mild, stable bronchiectasis and no exacerbations, it is a routine that works for me.

PS I'm not sure where you are in Illinois, but my friend has found a bronchiectasis specialist (not in a center) who practices in Decatur & Springfield - I can get details for you if that is somewhere near you. There are also specialists in Champaign/Urbana

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Thanks!
I’m in Urbana and would love to know of BX specialists nearby!

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@bronchiectasaurus

Thanks!
I’m in Urbana and would love to know of BX specialists nearby!

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I'll contact my friend and send you the information she has. It may take a day or so to get back to you.

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I wish someone would have told me about saline neb many years ago when I was first told by the pulmonologist "I don't know what you have but I would not rule out bronchiectasis". I doubt if saline nebbing was even done for BE back in 2001? At any rate I think it would have made a huge difference. If I were you I would keep doing it once a day at least. Maybe do the sinus thing once a day or a few times a week. You are lucky it is mild so do what you can to slow down the progression. And the exercise too of course.

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@irenea8

I wish someone would have told me about saline neb many years ago when I was first told by the pulmonologist "I don't know what you have but I would not rule out bronchiectasis". I doubt if saline nebbing was even done for BE back in 2001? At any rate I think it would have made a huge difference. If I were you I would keep doing it once a day at least. Maybe do the sinus thing once a day or a few times a week. You are lucky it is mild so do what you can to slow down the progression. And the exercise too of course.

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I feel very fortunate to have learned about saline so early. The doctor who ordered the CT scan knew nothing about it, but a friend of mine who is a doctor did. I texted him my diagnosis from the hospital, and he responded, "That explains the cough at least. Nebulized saline can help with that." So I found the salty path immediately!

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I sure recognize those conversations you're having with yourself. : ) I was diagnosed with mild bronchiectasis 3 years ago, but bring up little. I asked about nebbing daily since MAC was ruled out and docs agreed since it's dry. I do medicated sinus rinse usually 2x/day though I've tried to stop it a few times with pulmonologist ok. I hate it most, but we agreed I'll do it if secretions increase.
I find nebbing easy, but am getting more lax about the acapella/aerobika since I'm dry. Self nagging keeps me doing some. : ). Good luck!

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I had asymptomatic BE for a number of years and was ignorant of (or ignoring!) any serious potential issues until a new chronic dry cough eventually got me to a specialized BE program. I kicked and screamed and grudgingly started 2x/day saline nebbing and got respiratory therapy. Someone here said we run away from our dx and I felt that! Just like you I kept second-guessing whether all this was necessary. But then the RT got me finally producing sputum and ... I was positive for MAC. As Sue& others here explain, with minimal symptoms, antibiotic treatment is not always necessary but since I'm on an immune modulator for another condition, and the immune modulator would make me vulnerable to the MAC becoming very serious, it was not hard to follow the strong advice to treat. So I totally recognize your "really??" feelings, that was me too. Sue is a wonderful mentor plus give yourself some time to settle with the dx & what it means. At this stage taking care can slow or halt progression and help prevent infection. All best wishes!

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@lvnl

I had asymptomatic BE for a number of years and was ignorant of (or ignoring!) any serious potential issues until a new chronic dry cough eventually got me to a specialized BE program. I kicked and screamed and grudgingly started 2x/day saline nebbing and got respiratory therapy. Someone here said we run away from our dx and I felt that! Just like you I kept second-guessing whether all this was necessary. But then the RT got me finally producing sputum and ... I was positive for MAC. As Sue& others here explain, with minimal symptoms, antibiotic treatment is not always necessary but since I'm on an immune modulator for another condition, and the immune modulator would make me vulnerable to the MAC becoming very serious, it was not hard to follow the strong advice to treat. So I totally recognize your "really??" feelings, that was me too. Sue is a wonderful mentor plus give yourself some time to settle with the dx & what it means. At this stage taking care can slow or halt progression and help prevent infection. All best wishes!

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Hi. Have you started treatment yet? I am getting ready to start. Had my eye exam and next will be hearing test. I wish you the best.

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@shelly61

Hi. Have you started treatment yet? I am getting ready to start. Had my eye exam and next will be hearing test. I wish you the best.

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Hi @shelly61 , I'm in month 9 of treatment with Azithromycin, ethambutol and a study med - either arikayce or a placebo. We think it's Arikayce cuz I've had some of the effects. No rifampin. I started testing negative for Mac at 6 months but had one positive in March -- my doc said she doesn't put much stock in one positive so well assess at 12 months. Side effects minimal -- some air trapping which may be from Arikayce but not serious enough to stop the Arikayce/ placebo.
Eyes/hearing checks every 3 months, so far so good. I wish the same to you!

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