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

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

healthybon | @healthybon | Apr 3, 2023

Thank you Sue and Bklynprof......So appreciated!

REPLY
AZ | @equanimous | Apr 4, 2023
In reply to @kwi "There are videos of webinars by National Jewish Health and NTMir available on YouTube and also..." + (show)
@kwi

There are videos of webinars by National Jewish Health and NTMir available on YouTube and also on their websites.
Linda Esposito has a book called BE CLEAR about living with bronchiectasis and MAC. She also has a website called letsbecleartoday.com.

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Thank you so very much, kwi! I just checked out Linda's website and facebook page. Lots of great info. I just purchased her book. 🙂

REPLY
gej53 | @gej53 | Apr 8, 2023
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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Morning Sue,
THis is off topic but looked for your name on this site. I am no longer receiving my emails about MAC and bronchiectasis. Is there somewhere I need to click on something to start bringing them in to my email? Thanks so much.
Gail

REPLY
2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Apr 8, 2023
In reply to @gej53 "Morning Sue, THis is off topic but looked for your name on this site. I am..." + (show)
@gej53

Morning Sue,
THis is off topic but looked for your name on this site. I am no longer receiving my emails about MAC and bronchiectasis. Is there somewhere I need to click on something to start bringing them in to my email? Thanks so much.
Gail

Jump to this post

Hi Gail, There are lots of behind-the-scenes taking place on the Connect Website, and something caused a glitch that caused some email notifications to stop.
Here's the fix:
Go to the top of the screen and click [or tap] the person icon.
In the drop-down box click "Profile & Settings"
On the Profile page, click the "Settings" tab
Scroll down to "Notifications...Activity Involving Me" and click Edit, then make your choices and click "Update"
If you want to receive the Digest, Click Edit, make your choice and click "Update"

Now, on the off-chance that this doesn't fix things for you, send a message to our Moderator (@colleenyoung) and she will take care of you!
Hope to see you back soon.
Sue

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 8, 2023
In reply to @gej53 "Morning Sue, THis is off topic but looked for your name on this site. I am..." + (show)
@gej53

Morning Sue,
THis is off topic but looked for your name on this site. I am no longer receiving my emails about MAC and bronchiectasis. Is there somewhere I need to click on something to start bringing them in to my email? Thanks so much.
Gail

Jump to this post

As of March 1, 2023, the notification system has changed. You now have options to be notified by email and you can use the notifications onsite.

You will continue receive an emails for the following:
– the daily digest: A summary of the previous day's activity
– when a member @mentions you
– when a member replies to a post you made
– when a member reacts to a post you made
– when a member sends you a private message

Formerly you could choose to receive an email for every new post made to a support group. This resulted in too many emails on too many topics, overwhelming many members and causing them to leave the online community.

Now you can choose to get emails for all new posts for discussions of interest to you.

HOW TO GET EMAILS FOR ALL NEW POSTS BY DISCUSSION
1. Select a group from the Support Groups you follow. See My Support Groups (http://connect.mayoclinic.org/account).
2. Select a discussion of interest to you and click the bell icon in the bottom right of the first message.
3. Select "Send me an email and on-site notifications".
4. Click "Save Setting".

REPLY
2 replies
gej53 | @gej53 | Apr 9, 2023
In reply to @sueinmn "Hi Gail, There are lots of behind-the-scenes taking place on the Connect Website, and something caused..." + (show)
@sueinmn

Hi Gail, There are lots of behind-the-scenes taking place on the Connect Website, and something caused a glitch that caused some email notifications to stop.
Here's the fix:
Go to the top of the screen and click [or tap] the person icon.
In the drop-down box click "Profile & Settings"
On the Profile page, click the "Settings" tab
Scroll down to "Notifications...Activity Involving Me" and click Edit, then make your choices and click "Update"
If you want to receive the Digest, Click Edit, make your choice and click "Update"

Now, on the off-chance that this doesn't fix things for you, send a message to our Moderator (@colleenyoung) and she will take care of you!
Hope to see you back soon.
Sue

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Thank you Sue! Am going to try this right now. I really enjoy this site and the help provided on it by everyone and especially people like you. Have a wonderful Easter.

REPLY
gej53 | @gej53 | Apr 9, 2023
In reply to @colleenyoung "As of March 1, 2023, the notification system has changed. You now have options to be..." + (show)
@colleenyoung

As of March 1, 2023, the notification system has changed. You now have options to be notified by email and you can use the notifications onsite.

You will continue receive an emails for the following:
– the daily digest: A summary of the previous day's activity
– when a member @mentions you
– when a member replies to a post you made
– when a member reacts to a post you made
– when a member sends you a private message

Formerly you could choose to receive an email for every new post made to a support group. This resulted in too many emails on too many topics, overwhelming many members and causing them to leave the online community.

Now you can choose to get emails for all new posts for discussions of interest to you.

HOW TO GET EMAILS FOR ALL NEW POSTS BY DISCUSSION
1. Select a group from the Support Groups you follow. See My Support Groups (http://connect.mayoclinic.org/account).
2. Select a discussion of interest to you and click the bell icon in the bottom right of the first message.
3. Select "Send me an email and on-site notifications".
4. Click "Save Setting".

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THank you so much. Will start working on this and hopefully be successful. Appreciate this help.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 9, 2023
In reply to @gej53 "THank you so much. Will start working on this and hopefully be successful. Appreciate this help." + (show)
@gej53

THank you so much. Will start working on this and hopefully be successful. Appreciate this help.

Jump to this post

If you have any questions, you can send me a message using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

REPLY
gej53 | @gej53 | Apr 17, 2023

Morning Colleen,
Wanted to let you know that it worked from following the instructions and am now receiving the emails again. I like to check them to see if there is anything new in my journey. Love this site.

REPLY
gej53 | @gej53 | Apr 17, 2023
In reply to @colleenyoung "As of March 1, 2023, the notification system has changed. You now have options to be..." + (show)
@colleenyoung

As of March 1, 2023, the notification system has changed. You now have options to be notified by email and you can use the notifications onsite.

You will continue receive an emails for the following:
– the daily digest: A summary of the previous day's activity
– when a member @mentions you
– when a member replies to a post you made
– when a member reacts to a post you made
– when a member sends you a private message

Formerly you could choose to receive an email for every new post made to a support group. This resulted in too many emails on too many topics, overwhelming many members and causing them to leave the online community.

Now you can choose to get emails for all new posts for discussions of interest to you.

HOW TO GET EMAILS FOR ALL NEW POSTS BY DISCUSSION
1. Select a group from the Support Groups you follow. See My Support Groups (http://connect.mayoclinic.org/account).
2. Select a discussion of interest to you and click the bell icon in the bottom right of the first message.
3. Select "Send me an email and on-site notifications".
4. Click "Save Setting".

Jump to this post

This worked and I am now receiving new messages again. Thank you so much for your help.

REPLY
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