1. < MAC & Bronchiectasis

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.

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janovr | @janovr | Apr 1, 2019
In reply to @janovr "@brigby Yhank you for your post! So encouraging!" + (show)
@janovr

@brigby Yhank you for your post!
So encouraging!

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@windwalker The post of encouragement was meant for you, however, we all need it. I am going through a rough patch with URI that will not leave! UGH!

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Dee | @danielad | Apr 1, 2019
In reply to @windwalker "@danielad You should have a sputem test every six months at least." + (show)
@windwalker

@danielad You should have a sputem test every six months at least.

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@windwalker -- Terry, thanks, I didn't know!
--Dee

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Dee | @danielad | Apr 1, 2019
In reply to @merpreb "@brigby- So you don't use an inhaler and a nebulizer? I get it. Has your doctor..." + (show)
@merpreb

@brigby- So you don't use an inhaler and a nebulizer? I get it. Has your doctor mentioned a reason for your frequent infections? I am so sorry that you have to work so hard to keep healthy. Vacation is just around the corner, hopefully it will be a good one for you. I'm hoping that @janov, @danielad, will join this conversation.

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@merpreb, @brigby -- I was given inhaler and nebulizer. Admittedly, I only use them when I "must". However, what I found is that if I do use them as I should, I feel and do better. One more thing -- my pulmonologist was sure that my Bronchitis and Pneumonias were due to my continuous sinus infections -- She was right! So I had to add the sinus irrigations to inhaler and nebulizer! Then I had Sinus surgery and I have had NO sinus infections since that time ... and only 2 bronchitis ... I am a much happier camper!!!
--Dee

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2 replies
janovr | @janovr | Apr 1, 2019
In reply to @danielad "@merpreb, @brigby -- I was given inhaler and nebulizer. Admittedly, I only use them when I..." + (show)
@danielad

@merpreb, @brigby -- I was given inhaler and nebulizer. Admittedly, I only use them when I "must". However, what I found is that if I do use them as I should, I feel and do better. One more thing -- my pulmonologist was sure that my Bronchitis and Pneumonias were due to my continuous sinus infections -- She was right! So I had to add the sinus irrigations to inhaler and nebulizer! Then I had Sinus surgery and I have had NO sinus infections since that time ... and only 2 bronchitis ... I am a much happier camper!!!
--Dee

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@danielad Your post could be from me! But I have figured it out for myself after a month of bronchitis. Looking back, every March, April , or May for the past 6 years when the pollen hits... I get bronchitis. I have learned to try and nip it, but this year it has lasted the entire month of March. Finally after 3 antibiotics nearing the end.
I just got a nebulizer! Jan/Fl.

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1 reply
pfists | @pfists | Apr 1, 2019
In reply to @brigby "@pfists how long ago were you diagnosed with m. Abscessus, and how long have you tested..." + (show)
@brigby

@pfists how long ago were you diagnosed with m. Abscessus, and how long have you tested negative?

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@brigby
I tested positive for mycobacteria Abcessus for over a year and have tested negative for two years.
I did use some herbal antibiotics though.
Shari

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migizii | @migizii | Apr 1, 2019
In reply to @tdrell "Everyone....National Jewish Health on Sept 21st 2019 is having annual NTM lecture for Patients and Families..." + (show)
@tdrell

Everyone....National Jewish Health on Sept 21st 2019 is having annual NTM lecture for Patients and Families in Denver. It probably will be videoed so in future, non attendees can see on line. @tdrell

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@migizii is this a conference? Is there a website I can check this out at? My son lives in Denver and I could possibly make a trip out out of it!

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Dee | @danielad | Apr 1, 2019
In reply to @janovr "@danielad Your post could be from me! But I have figured it out for myself after..." + (show)
@janovr

@danielad Your post could be from me! But I have figured it out for myself after a month of bronchitis. Looking back, every March, April , or May for the past 6 years when the pollen hits... I get bronchitis. I have learned to try and nip it, but this year it has lasted the entire month of March. Finally after 3 antibiotics nearing the end.
I just got a nebulizer! Jan/Fl.

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@janovr -- Hi! Another person who understands is always welcome! I stay away from everything I can -- Pollen, grasses, weeds, dogs, cats, molds, dust and dust mites ... If I don't, I will get back to where I was! Stay healthy!
--Dee

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1 reply
tdrell | @tdrell | Apr 1, 2019

@migizii...go for it...the NJH conference....it is all day..cost is $25 total. It includes a delicious breakfast and lunch and great speakers. Go to NationalJewish.org.....in search bar...type “2019 NTM Lecture Series for Patients and Families” scroll down .... having son live there is a great convenience....I have attended for 3 years and always learn soooo much.tdrell

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1 reply
tdrell | @tdrell | Apr 1, 2019
In reply to @windwalker "@tdrell That happened to you the last time you traveled to Denver (last yr). Are you..." + (show)
@windwalker

@tdrell That happened to you the last time you traveled to Denver (last yr). Are you getting bronchiestis from the air on the airplanes?

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@windwalker Terri.... hard to pinpoint how/where I got the bronchitis from this year....we flew for weekend to San Diego to be with son and his 2 year old...who had continuous cold and vomited the evening we left....then another flight to Denver where 8 year old, daughter -,son -in -law all had colds...then an hour with NJH doctor in small room while she had mask on for a cold...then back on plane!!! I rationalized the bronchitis and sinusitis by knowing a) had one bout vs 3 like 2018 b) did not get influenza A like last year . Thanks for asking Terri tdrell

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