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

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

@dispatchpat

Fdixon63 - I would very much appreciate it if you would share your doctors recipe for the saline solution. I’ve reached my limit trying to get Medicare part B, or my part D medicine coverage, or even,… Get this, my temporary dual Medicaid coverage to admit the coverage. They point like the scarecrow in the wizard of oz sending me back-and-forth like a ping pong ball between the three of them. Beyond frustrated
Thanks!

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To everyone considering homemade saline, or using larger (eg 15ml) ampules of saline:
This should be required reading -
https://www.ima.org.il/FilesUploadPublic/IMAJ/0/263/131866.pdf
Once opened, either commercial or homemade saline gets contaminated quickly. So opened saline containers need to be handled with extreme caution and discarded after 24-48 hours.
In medical settings, open saline, used for flushing IV's, wounds, etc is carefully labeled, used on one only patient and discarded in 24 hours or less.

Bottom line - yes, you can safely follow instructions and make your own. But do it every day.

The measurements to use are as follows:
3% saline is 1.4 tsp salt/1cup water. Or 5.6 ml salt/200 ml water
7% saline is 3.3 tsp salt/1 cup water. or 13ml salt/200 ml water.
As you can see, this makes far more saline than you can use in 1-2 days.
If you can get tiny, glass containers, you can make up one batch. Sterilize your containers and lids, pour in the saline directly from the boiling vessel & and seal each container. Open one each day; discarding remainder at the end of the day.
Sue
Sue

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@dispatchpat

Fdixon63 - I would very much appreciate it if you would share your doctors recipe for the saline solution. I’ve reached my limit trying to get Medicare part B, or my part D medicine coverage, or even,… Get this, my temporary dual Medicaid coverage to admit the coverage. They point like the scarecrow in the wizard of oz sending me back-and-forth like a ping pong ball between the three of them. Beyond frustrated
Thanks!

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dispatchpat - Hi. I did find the recipe for 7% and took a photo but when I tried to send it said, "Could not open." I'm not a whiz at this but if you're comfortable sending me a private message giving your phone # so I can text it, I'm sure I can send it OK. It's pretty lengthy and right now I don't have time to type it out. Anyway, just let me know.

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I am commenting on this late but I wonder the same thing. It seems that some healthcare provider could do a research study on this (progression of bronchiectasis) and give us a trending graph! I remember reading articles in nursing research journals that measured all kinds of illnesses, both social and physical. Does mayo have a research dept. that we can access?
Just griping!

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FWIW, no science here but from another website, forum based, lots of people are in their 80s. I'm going with that! LOL

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I remember reading the postings here in this group, there are two people who mentioned that they reach 90 years old. We don't know how long they have the conditions, but there are inspiring stories.

Ling

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I am almost 86 and have had bronchiecstasis for several years and recently diagnosed with MAC. Not being treated because I am not symptomatic. I was tested because what was diagnosed as asthma many years ago seemed to be getting worse and I had changed pulmonologist and he said I didn't have asthma according to a pft. Anyway, he follows the NJH protocol and started me on ACTs. And I am really doing well. I am also on Hizentra once a week.

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@leilam,
Thank you so much for being so thoughtful to share your experience with the group which is very encouraging. I am sure lots of people would love to know. What is ACTs?
All the best!
Ling

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@wangling

@leilam,
Thank you so much for being so thoughtful to share your experience with the group which is very encouraging. I am sure lots of people would love to know. What is ACTs?
All the best!
Ling

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@Ling
Airway clearance techniques.

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Thankyou everyone. I was just griping because i just retired and am having time to think about how long I have had bronchiectasis! I can remember starting yoga around 50 years old and having to run to the bathroom after shoulder stand to cough up mucus. I guess i call that the starting point. 12 years later, got the flu and a chest xray, that showed nodulation, backed up with ct scan and 2 + mac sputums.
(Finished a year of big 2) i was allergic to rifampin) and am - mac. So….doing all the right things(thanks to this group)). But dread exacerbations. It took me 2 months to get back to semi baseline after last virus. Since I’m 65, i wonder what my curve on the NTM graph would look like?

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Good advice and conversation on this site.

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