1. < MAC & Bronchiectasis
Profile picture for eileen86

What causes Bronchiectasis to worsen?

Posted by eileen86 @eileen86, Feb 13 3:17pm

Does Bronchiectasis worsen ONLY as a result of exacerbations, or once established, can it advance on its own, even without exacerbations?

Thanks.
Eileen

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

Profile picture for Sue, Volunteer Mentor
Mentor
Sue, Volunteer Mentor | @sueinmn | Feb 14 4:08pm
In reply to @toni4501 "@eileen86 that is the magic bullet in all this management criteria. Having the most knowledgeable and..." + (show)
Profile picture for toni4501 @toni4501

@eileen86 that is the magic bullet in all this management criteria. Having the most knowledgeable and experienced doctors. I thought I had that with my ID doctor, but recently found out I didn’t. I’ve been recently diagnosed with pseudomonas and other various bacteria on my lungs. I was so disappointed because since I was diagnosed with Bronchiectisis and MAC I was able to stay clear of pseudomonas infections. She put me on one round of Levofloxacin and after 10 days, the culture, which I insisted on having done, she wasn’t going to do another, came back worse she just laughed it off. “Oh well sometimes it works and sometimes it doesn’t and then went on to tell me that that’s all they do, there is no more. I was floored! Then, I went to my Pulmonologist and he and a Superior Pulmanologist wanted to put me on 30 days of Levafloxacin and Tobramycin. My insurance company requested a prior authorization for the tobramycin my pharmacist and I have reached out to my Pulmonologists but have not received a response and therefore I have not been able to get the tobramycin. So, all I can think of a is well, I guess they weren’t concerned about getting this medication in me. I am just totally at a loss for the lack of concern for us who are dealing with this disease and doing everything we can with our knowledge to try to avoid exacerbations. It’s just really tough when you don’t have good medical teams backing you and guiding you !!

Jump to this post

@toni4501 OH Toni, it is so discouraging when our docs don't respond!
Here is a hint from having been caught up in "prior authorization limbo" for several meds last year. Find out if your clinic just hands over all prior authorization requests to a designated person, department, or contractor. Then get their contact info and deal with them directly. They are not only wizards at knowing the terminology and codes to use, they know how to get to each doctor too. One helpful staffer explained last year - with some docs, I know that prefer email. Others want My Chart messages, and some want me to deal with their nurse or PA. And for the real [problem ones], I go to their office or the break room and won't leave until they deal with me!
So far it has worked for everything except getting the special nebulizer my doc prescribed; I gave up and bought it with my HSA dollars.

REPLY
Profile picture for gerry26
gerry26 | @gerry26 | Feb 15 11:46am
In reply to @pattyrobertson "@sueinmn I have bronchiectasis and abpa and went out of town for 6 weeks. Usually i..." + (show)
Profile picture for pattyrobertson @pattyrobertson

@sueinmn
I have bronchiectasis and abpa and went out of town for 6 weeks. Usually i have trouble coughing up sputum after nebulizing and airway clearance but during the 6 weeks I coughed up alot of jade green sputum every evening. Should I of called in antibiotics even though i did not have a fever?

Jump to this post

@pattyrobertson When I travel, my primary care physician prescribes azithrommcin and Methylprednisolone to carry with me just in case. He's familiar with my long history of respiratory infections and diagnosed BE. Idon't bother asking my pulmonologist since he never mentioned BE.

REPLY
View MoreView Less
Please sign in or register to post a reply.