1. < MAC & Bronchiectasis

How does bronchiectasis progress?

Posted by @ling @wangling, Mar 31, 2023

Hi all,
As I am reading, that bronchiectasis is a chronic and progressive disease.
How does it progress based on your experience? I seem to remember that some people are able to keep the condition stable. Does cough make the condition worse?Your experience is greatly appreciated.
Thanks!
Ling

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Mentor
Sue, Volunteer Mentor | @sueinmn | Dec 4, 2023

@jnmy Welcome to Mayo Connect, and thanks for the warm comment. We welcome new members, both their input and questions.
What brought you to visit our MAC & Bronchiectasis Support Group?
Sue

REPLY
2 replies
jnmy | @jnmy | Dec 5, 2023
In reply to @sueinmn "@jnmy Welcome to Mayo Connect, and thanks for the warm comment. We welcome new members, both..." + (show)
@sueinmn

@jnmy Welcome to Mayo Connect, and thanks for the warm comment. We welcome new members, both their input and questions.
What brought you to visit our MAC & Bronchiectasis Support Group?
Sue

Jump to this post

A diagnosis of Bronchiectasis and needing to better understand it. I’ve read a lot deal about it. My family doctor unfortunately knew very little. I follow precautions, have all required vaccines and use an airway clearance method called Aerobika. Also, hearing about how other people live and manage with it is helpful. Thanks.

REPLY
blm1007blm1007 | @blm1007blm1007 | Jan 25 5:12pm
In reply to @sueinmn "@jnmy Welcome to Mayo Connect, and thanks for the warm comment. We welcome new members, both..." + (show)
@sueinmn

@jnmy Welcome to Mayo Connect, and thanks for the warm comment. We welcome new members, both their input and questions.
What brought you to visit our MAC & Bronchiectasis Support Group?
Sue

Jump to this post

Sue-
Could not find anything or any area of the Blog that talks about AA (secondary) amyloidosis.
I have read it is characterized by a protein called "serum amyloid A." This protein is produced by the body in response to inflammation or infection.
Are you familiar with this. It apparently can be related to Bronchiectasis.
Related to water input and urininary output all related to the kidneys/kidney disease, the heart, edema, if I understood all correctly.

REPLY
happy2023 | @happy2023 | Nov 9 6:14pm
In reply to @scoop "@gej53 Would it be possible to say more about the Hillrom Volara system? How helpful has..." + (show)
@scoop

@gej53 Would it be possible to say more about the Hillrom Volara system? How helpful has it been for you?

Jump to this post

I am 77 and have had Bronchiectasis for 10 years. I have recently been prescribed the Volara system by Hillrom, and after the demonstration at Respiratory Therapy at NJH, I feel like it will be very helpful as another airway clearance technique.
Could you tell me how you like the Volara and if it has been beneficial for you?

REPLY
happy2023 | @happy2023 | Nov 9 6:34pm

I just now saw your reply about your using the Volara system. And I thank you for the information.
May I ask if your protocol is the same as mine:
Morning and evening: Levalbuterol inhaler, nebulized 7% saline (I use the Ombra machine), and lastly Symbicort low dose 80mcg/45mcg (2 puffs morning, 2 puffs evening)
I do manual airway clearance mid-day with supine exercises, manual percussion, diaphragmatic breathing, huff coughing, and Aerobika.
I was using a percussion vest until I had spinal compression fractures, and now will switch to a wrap instead of the vest while I continue to heal.
As far as the progression of my bronchiectasis, I have noticed that as I age, I have to be diligent with airway clearance. I have had no exacerbations since I began treatment in November of 2023 at National Jewish Health in Denver.
Best wishes.

REPLY
2 replies
lilianna | @lilianna | 6 days ago
In reply to @happy2023 "I just now saw your reply about your using the Volara system. And I thank you..." + (show)
@happy2023

I just now saw your reply about your using the Volara system. And I thank you for the information.
May I ask if your protocol is the same as mine:
Morning and evening: Levalbuterol inhaler, nebulized 7% saline (I use the Ombra machine), and lastly Symbicort low dose 80mcg/45mcg (2 puffs morning, 2 puffs evening)
I do manual airway clearance mid-day with supine exercises, manual percussion, diaphragmatic breathing, huff coughing, and Aerobika.
I was using a percussion vest until I had spinal compression fractures, and now will switch to a wrap instead of the vest while I continue to heal.
As far as the progression of my bronchiectasis, I have noticed that as I age, I have to be diligent with airway clearance. I have had no exacerbations since I began treatment in November of 2023 at National Jewish Health in Denver.
Best wishes.

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Happy2023. You do a lot and probably that’s why you haven’t had an axe verbatim since November. You say you are on treatment- is it the antibiotics? Are you monitored by NJH? Has your collars system been approved by your insurance? Thank you and I am happy for you staying healthy

REPLY
1 reply
lilianna | @lilianna | 6 days ago
In reply to @lilianna "Happy2023. You do a lot and probably that’s why you haven’t had an axe verbatim since..." + (show)
@lilianna

Happy2023. You do a lot and probably that’s why you haven’t had an axe verbatim since November. You say you are on treatment- is it the antibiotics? Are you monitored by NJH? Has your collars system been approved by your insurance? Thank you and I am happy for you staying healthy

Jump to this post

Exacerbation

REPLY
lilianna | @lilianna | 6 days ago
In reply to @happy2023 "I just now saw your reply about your using the Volara system. And I thank you..." + (show)
@happy2023

I just now saw your reply about your using the Volara system. And I thank you for the information.
May I ask if your protocol is the same as mine:
Morning and evening: Levalbuterol inhaler, nebulized 7% saline (I use the Ombra machine), and lastly Symbicort low dose 80mcg/45mcg (2 puffs morning, 2 puffs evening)
I do manual airway clearance mid-day with supine exercises, manual percussion, diaphragmatic breathing, huff coughing, and Aerobika.
I was using a percussion vest until I had spinal compression fractures, and now will switch to a wrap instead of the vest while I continue to heal.
As far as the progression of my bronchiectasis, I have noticed that as I age, I have to be diligent with airway clearance. I have had no exacerbations since I began treatment in November of 2023 at National Jewish Health in Denver.
Best wishes.

Jump to this post

Volara system- darn iPhone typing

REPLY
blm1007blm1007 | @blm1007blm1007 | 6 days ago
In reply to @jj123 "I will be 90 in two months, and I have been diagnosed with Mac. My doctor..." + (show)
@jj123

I will be 90 in two months, and I have been diagnosed with Mac. My doctor never recommended a nebulizer. When I inquired about one, he did prescribe it. I have not used it very much, because the fact that he did not prescribe it, I felt it might not be that beneficial. However, Reading these comments from people who use them, I get the ideas are very beneficial. My doctors want me to take the big three meds, but I am very reluctant. Any advice or comments would be greatly appreciated.

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How are you doing?
Since your post in April of 2023 what have you been doing or not doing?
Do you have other chronic health problems that make it all worse or come into play in the big picture with bronchiectasis.
Did you ever start using the nebulizer, airway clearance etc. etc.
I am 82 and have been told to start taking Azithromycin and Ethambutol.
I keep thinking that one has to look at the big picture and the possible time one has left on this earth....
At this juncture I haven't been diagonsed with any other major chronic health problem. Yes dry eyes and typical age related minor eye problems and moderate hearing loss.
Barbara

REPLY
annette18 | @annette18 | 3 days ago
In reply to @sueinmn "@wangling and @equanimous Progression in lung disease is a puzzle. I'm not sure anyone has an..." + (show)
@sueinmn

@wangling and @equanimous
Progression in lung disease is a puzzle. I'm not sure anyone has an exact answer, but there are some ways to slow disease progress that most experts will agree on.

First, stop any and all smoking and vaping, or exposure to secondhand smoke.
Second AIRWAY CLEARANCE with 7% saline, if recommended.
Stay as healthy as you can with good diet, rest as much exercise as possible, even when you don't feel like it.
Avoid respiratory infections - stay away from sick people, indoor crowds in flu and cold season, mask when you can't avoid being "out there."
Follow treatment plans including maintenance meds, keeping other conditions under control (asthma, allergies, GERD, diabetes, blood pressure...) to avoid taxing your body.
Keep up with your doctor visits and tests, so changes are identified early and can be treated quickly.
Finally, a positive attitude goes a very long way. It helps keep you moving, and living rather than simply existing.

My mantra: "Bronchiectasis is what I have, not who I am. I cannot cure it, but I can manage it. I am living my best life in spite of it, and the other chronic conditions I have. "
Sue

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Thank u Sue for your positive approach to staying well. I’ve had Bronchiectasis for many yrs .I did yoga, tennis and p/b until I developed Abscesses about 3yrs ago. I chose not to do IV therapy n 3 different drugs. I continued my activities but now having some SOB .I can play tennis n do yoga. I do Formoteral inhalation once a day but continue with SOB.
I keep a positive attitude but feel so frustrated at times.
I appreciate you n any suggestions

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