I was recently diagnosed with Bronchiectasis.

Posted by mmteach @mmteach, May 10, 2016

I was recently diagnosed with Bronchiectasis. No symptoms yet just starting different tests- another CAT scan, pulminary function test, and possible bronchoscopy. Any advice/suggestions would be greaty appreciated. Thank you!

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

@sueinmn

@kaykuz posted a message about the progression of her bronchiectais in hopes of finding support from others in the group. Here is her message, shared with her permission:

Hi Sue...I have been on the site for a while. For some reason I can't find how to post and this would be too long I think....Anyway I wanted to ask you a few questions...I was diagnosed with Bronchiectisis and MAC 6 years ago....I took the big 3 for a year and did well...But now MAC has returned....Just had a cat scan and sputum cultures....My scan a year ago Oct 22 nd had no change and I was so happy....I have had 5 flare ups since Nov of last year.. and I think that caused damage to my lungs as the scan showed the source of infection was the right middle lobe....bronchial wall thickening, bronchiolitis in both lungs. complete chronic atelectais of the right middle lobe with a few new clusters of bronchiolitis in bilateral lower lobes... Just did a sputum culture and he wants to see if MAC still there....I am sure it is....Then he wants me to see the the ID Doc....which I have seen twice...last two years...not this year.
He also has suggested the vest.....I do not cough up mucus or cough unless I have a flare up....Did you ever do the vest? I have done the 7% for two years along with albuterol. I think I'd rather go on the meds than the vest.....
My doctor is at Cleveland Clinic and I also have a pulmonary doc in Fl where we winter for 7 months...
Thank you for your time and I hope to hear from you...
Kaye

If anyone (especially long-time bronchiectasis people and vest users) are willing to reach out, I am sure she would appreciate it. Please tag Kaye by including @kaykuz in your post so she will be sure to see it.
Sue

Jump to this post

@kaykuz. I don’t know how helpful I can be as I have not experienced MAC or NTM infections, to date, with my bronchiectasis. I have had this diagnosis since 2016 and my pulmonologist recommended putting me on the vest due to very little sputum production and a few exaberation episodes. I use it twice daily along with albuterol and 7% nebulizing solution. It takes up time in my day, but from what I read about on this site, I would much prefer this regiment to the medications for treating a MAC or NTM infection as people say it’s very hard on your body. We all have to make our own choices regarding treatment decisions and I wish you the best along your journey.

REPLY
@migizii

@kaykuz. I don’t know how helpful I can be as I have not experienced MAC or NTM infections, to date, with my bronchiectasis. I have had this diagnosis since 2016 and my pulmonologist recommended putting me on the vest due to very little sputum production and a few exaberation episodes. I use it twice daily along with albuterol and 7% nebulizing solution. It takes up time in my day, but from what I read about on this site, I would much prefer this regiment to the medications for treating a MAC or NTM infection as people say it’s very hard on your body. We all have to make our own choices regarding treatment decisions and I wish you the best along your journey.

Jump to this post

Do you use an albuterol inhaler or nebulize a solution of albuterol to open your lungs?

REPLY
@montsi

Do you use an albuterol inhaler or nebulize a solution of albuterol to open your lungs?

Jump to this post

In my case, the answer is "it depends". On a normal day, I use the inhaler before. On a bad day (tight chest, feeling under The weather, bad allergies...) I neb with levalbuterol first, then the saline. If I have a cold or bronchitis I neb first with duoneb (budosenide plus albuterol) then saline.
What does everyone else do?
Sue

REPLY
@montsi

Do you use an albuterol inhaler or nebulize a solution of albuterol to open your lungs?

Jump to this post

In reply to @kaykuz I nebulize with albuterol first to open lungs and then the 7%solution. I don’t really mind sitting around with the “thumper” on…hehe….it tires me out sometimes, but it’s ok.

REPLY

Teach, In the absence of symptoms, how did your lungs happen to show up in the “diagnostic crosshairs?” Don

REPLY
@sueinmn

In my case, the answer is "it depends". On a normal day, I use the inhaler before. On a bad day (tight chest, feeling under The weather, bad allergies...) I neb with levalbuterol first, then the saline. If I have a cold or bronchitis I neb first with duoneb (budosenide plus albuterol) then saline.
What does everyone else do?
Sue

Jump to this post

Sue, why do you neb with doneb 1st if you have a cold or bronchitis, I am trying to learn all I can.

REPLY
@raney

Sue, why do you neb with doneb 1st if you have a cold or bronchitis, I am trying to learn all I can.

Jump to this post

Duoneb has irpatropium bromide and albuterol, both bronchodilators - each works a bit differently, so they are dispensed together. This makes sure the lungs are as open as possible to accept a saline neb that then gets the mucus flowing more freely. The neb is far more effective than an inhaler, at least for me.
Sue

REPLY
@sueinmn

Duoneb has irpatropium bromide and albuterol, both bronchodilators - each works a bit differently, so they are dispensed together. This makes sure the lungs are as open as possible to accept a saline neb that then gets the mucus flowing more freely. The neb is far more effective than an inhaler, at least for me.
Sue

Jump to this post

I am doing levalbuterol and then 7% NaCL then budesonide. So was wondering why you did that 1st.
Also teh budesonide caused thrush. I have been treating for over a month now and still have thrush! 1st was clotrimazole Lozenge for 3 weeks and now nystatin oral suspension. I am also rinsing and gargling with salt water and apple cider vinegar . Copious amounts of mucus and sputum from lungs and chronic sinusitis. I have tried 3 different prescription nasal sprays. Each made breathing more difficult. I am doing saline nasal rinses, but have to do it every day and sometimes 2 X day.

REPLY

Been recently diagnosed with bronchiecstasis and don't really know a lot about it except what I listened to from the pulmonary specialist. I have had sarcoidosis for a long time but it does not seem to bother me too much. I cough a lot with the yellowish and green stuff appearing, and I have used a nebulizer for the first time and it seemed to be okay. Any info or tips on helping me learn more about it.

Alecia

REPLY
@alecia52

Been recently diagnosed with bronchiecstasis and don't really know a lot about it except what I listened to from the pulmonary specialist. I have had sarcoidosis for a long time but it does not seem to bother me too much. I cough a lot with the yellowish and green stuff appearing, and I have used a nebulizer for the first time and it seemed to be okay. Any info or tips on helping me learn more about it.

Alecia

Jump to this post

Hi Alecia and welcome,
You'll notice that I moved your question about bronchiectasis to this existing discussion:
- I was recently diagnosed with Bronchiectasis https://connect.mayoclinic.org/discussion/i-was-recently-diagnosed-with-bronchiectasis-no-symptoms-yet-just-starting-different/

I did this so you can easily connect with people who can answer your questions about your new diagnosis, members like @raney @sueinmn @thumperguy @migizii @poppins @pal131 @toni1132 @gej53 @jr2366 @nannette and many more.

You might also be interested in these related discussions:
- Bronchiectasis: New Diagnosis https://connect.mayoclinic.org/discussion/bronchiectasis-new-diagnosis/
- Bronchiectasis: Is nebulizing helpful? https://connect.mayoclinic.org/discussion/bronchiectasis/

How is the nebulizing working for you?

REPLY
Please sign in or register to post a reply.