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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@scoop

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

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It has been very helpful. Once I received this {along with my percussion vest} the secretions in my lungs began to loosen. My pulmonologist gave me a script so it was covered by insurance. I did have a co-payment that was broken into payments. It has four cycles where you simply inhale and exhale for two and then two of the cycles pulsate so it is a little more forceful for your nebulizing solution to go into your lungs. Each cycle lasts 2 1/2 minutes. It has tubing that has to be replaced every 90 days but Hillrom has been very easy to work with and respond quickly to calls and mailing out the tubing. My insurance covers this also.

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I know aerobic exercise is very important, but it's difficult when trying to conserve calories because of weight loss - - both things being considered.
I do strength training 3 times a week and would love more aerobic, but every lb is major progress - - unfortunately. Any suggestions -

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@jave

Thank you.
I've heard the side effects of 18 months of azithromycin is kidney failure. Do you know about the other two?

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I have kidney issues (stage 4) and I am allowed 250 mg azithromycin every other day indefinitely and have been on this for at least 5 months so far with no change in kidney function. (This is a treatment for pseudomonas which is not agreed to by many members of this forum because of the possibility of resistance and other reasons. ) My kidney doctor is very very careful and has not suggested that this is a problem but the dosage is reduced in half from 500 to 250. This is all I can say. It could all be wrong and I am sure there is disagreement but I have to follow some doctor's advice and so far I am doing well.

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@liz440

I have kidney issues (stage 4) and I am allowed 250 mg azithromycin every other day indefinitely and have been on this for at least 5 months so far with no change in kidney function. (This is a treatment for pseudomonas which is not agreed to by many members of this forum because of the possibility of resistance and other reasons. ) My kidney doctor is very very careful and has not suggested that this is a problem but the dosage is reduced in half from 500 to 250. This is all I can say. It could all be wrong and I am sure there is disagreement but I have to follow some doctor's advice and so far I am doing well.

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Thank you for all the info.
And good luck with your condition.
I will trust in the expertise of my Mayo doc, but I definitely have to be convinced that he can balance any meds carefully before I agree
to them...as you have.
Thanks again for taking the time to answer my question.
(What I said about azithromycin is something I heard 10 years ago when I started on the MAC journey, probably not true)

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@kwi

I do not know about kidney failure with azithromycin, but it can affect the heart rhythm in some people. Ethambutol can potentially cause vision loss so it’s important to be checked often by an ophthalmologist while on it. I don’t know what else Rifampin other than it can make tears, sweat, and urine orange. The treatment with these three drugs have made a difference with those with MAC, others with no or few symptoms have opted not to take them.

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I have been on the big 3 since 2/22 and 6 weeks ago was taken off ethambutol by my eye specialist because I failed 2 field viewing tests. I guess that was a good call as I passed the test last week.

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@lauraadam2425

I have been on the big 3 since 2/22 and 6 weeks ago was taken off ethambutol by my eye specialist because I failed 2 field viewing tests. I guess that was a good call as I passed the test last week.

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I’m glad you stop taking the ethambutol in time. How often did you see your eye specialist?

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@kwi

I’m glad you stop taking the ethambutol in time. How often did you see your eye specialist?

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I actually see 3 different ones so I see at least 1 every 2 to 3 months. My mother went blind with glaucoma so since it is passed from mother to daughter I am checked 2 to 3 times a year. They also give me the color tests too. I would recommend anyone on the big 3 for MAC see an eye Dr at least every 6 months.

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I am having a hard time finding 3% NS for my Nebulizer. Is anyone else having the same problem. Have you ever made your own Nebulizer Saline? My Dr gave me a recipe for it. But I am afraid I will goof up and it want be sterile.

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@leilam

I am having a hard time finding 3% NS for my Nebulizer. Is anyone else having the same problem. Have you ever made your own Nebulizer Saline? My Dr gave me a recipe for it. But I am afraid I will goof up and it want be sterile.

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leilam, I'm very interested in how many respond to your question. My doctor had given me a "recipe" for 7% but I'm holding off trying it. What if it is, at some point contaminated and you breath some bacterium directly into your lung. We have enough of a problem already without adding to it.

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My pharmacy is also having a difficult time locating 3% vials but did locate and stock vials containing 15L with instructions to pour only 4ml into nebulizer. I use one vial 2x a day. I have however wondered if reuse of the vial is sterile. Not sure about making your own but again the importance of a sterile solution shouldn’t be discarded. I wish you luck in locating 3% for the benefits of its use is most helpful.

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