Bronchiectasis: New Diagnosis

Posted by navylady @navylady, Jul 26, 2018

New to your group. Non-smoker. Pneumonia x6 in 12 years, double pneumonia twice. Was diagnosed with chronic bronchitis and COPD for past 15 years, now pulmonologist based on x-rays and MRI has diagnosed no COPD, yes bronchiectasis. Take advair 250/50 twice a day. Past ten days I am increasingly gurgling, wheezing, some chest pain. I have recently moved to Florida which I like but am having long wait times to get into see a family care NP who can hopefully refer me to a pulmonologist. I walk 20-30 minutes a day. Any ideas how to manage this now. Am worried about getting pneumonia again. I went to one walk-in clinic at a reputable hospital. They literally did nothing except take x-rays. Didn't even talk to me. Just billed $2000+ for x-rays. Do I try another walk-in clinic. I feel very alone right now with this chronic medical problem.

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

toni1132 | @toni1132 | Aug 30, 2020

In reply to @windwalker "That is right Joann, some geographical areas are 'hot spots' for MAC. May I ask what..." + (show)

May I ask if there is a place to obtain that information? I'm curious. Thank you, Toni

toni1132 | @toni1132 | Aug 30, 2020

In reply to @windwalker "Hi Joann. I was put on inhaled tobramycin. It knocked the pseudomonas right out in a..." + (show)

I'm reading this info and I have to say, I don't know what these "suseptability" tests are. I don't know if my ID doctor has run them but I'm going to find out. I also wonder why no one, ID doctor and/or plumonolgist hasn't said anything about nebulizing. I did ask my Pulm. doc about it and he said I don't need it, as long as I use my Albuterol before using my Smart Vest, he said it accomplishes the same thing.??? Thank you for any input. Toni

kathyhg | @kathyhg | Sep 1, 2020

I can’t imagine that the nebulizer wouldn’t improve airway clearance, in addition Albuteral and the smart vest. Many of us found out about using the nebulizer here and not from our doctors (myself included) and went back to doctors to make a case for it.
Good luck either way.

thumperguy | @thumperguy | Sep 1, 2020

In reply to @toni1132 "I'm reading this info and I have to say, I don't know what these "suseptability" tests..." + (show)

Toni, are you diagnosed with MAC? Don

thumperguy | @thumperguy | Sep 2, 2020

In reply to @toni1132 "I'm reading this info and I have to say, I don't know what these "suseptability" tests..." + (show)

Toni, the reason I asked about a MAC diagnosis is that if you do, in fact, have MAC that's ample reason to nebulize 7% saline since 7% saline has, at least, the potential of killing MAC infections. That information appeared on this forum several months ago. Don't count on your doc to know about it; mine didn't but was receptive to learning it from me and promptly Rx'd it. Don

toni1132 | @toni1132 | Sep 3, 2020

Thank you, Don. I do have MAC. This is why I mentioned to my Pulm about nebulizing.... I've read so much about it on this site. But he dismissed the idea saying I'd accomplish the same thing by just using my Albuterol before using my Smart Vest. I think I'm going to contact a Pulm at Univ. of NC. Thank you !

toni1132 | @toni1132 | Sep 3, 2020

In reply to @kathyhg "I can’t imagine that the nebulizer wouldn’t improve airway clearance, in addition Albuteral and the smart..." + (show)

Thank you, I'm going to give it another go with my Pulm and ID doc.

Terri Martin, Volunteer Mentor | @windwalker | Sep 9, 2020

In reply to @toni1132 "Thank you, Don. I do have MAC. This is why I mentioned to my Pulm about..." + (show)

@toni1132, Toni, I believe your dr's thought process is that the saline is used to cause you to cough to bring up phlegm, and the vest is designed to help you bring up phlegm by shaking it loose. Both have the same goal, except I believe the saline also helps to kill the bacteria. Bacteria (most) do not like salt, giving your lungs a salty environment makes it inhospitable to them. Think back to when your mom probably asked you to gargle with warm salt water when you had a sore throat; it was to kill the germs there. Fish and olives are a few foods that are preserved in a salt brine because bacteria won't grow in it. So, in theory, the saline does more than cause you to cough to be affective.

barbb | @barbb | Sep 14, 2020

@navylady Hello navy lady. The hospital that did all the tests for which you paid owes you an evaluation of the tests! Did you not want to pursue that?

barbb | @barbb | Sep 14, 2020

@navylady, A few minutes ago I posted a response to your email. This was my first time ever becoming aware that there is a group for bronchiectasis, which I have. (I am in the Hearing Loss and Aging Well groups.) I apologize for not writing something specific to your situation here. I am in effect, using this as a way to get my foot in the door (so to speak) of this group. I think I did not properly introduce myself with the first comment I made in this group, just a few minutes ago. And I am not sure how to do that - to have a moniker so I hope a leader will step up and help me with that! (I don't recall the moniker for those other groups but it goes something like barbb . My bronchiectasis was diagnosed a year ago. From what I read here I think it is a milder version. I think my pulmonologist is very knowledgeable. The only thing I am doing is using the Acapella - a device through which I expel breath 10 times,, 2/day.