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.

@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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@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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@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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@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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@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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@pfists which herbals did you use

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@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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@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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@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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@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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@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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Morning Dee- I am so glad for you! But begin to use your inhalers regularly and feel even better!

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@danielad

@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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@danielad– Are you confining yourself to living indoors, housebound?

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@merpreb

Morning Dee- I am so glad for you! But begin to use your inhalers regularly and feel even better!

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Morning to you Merry! My concern is that I will get used to it and it will stop working when I need it. What do you think?

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@merpreb

@danielad– Are you confining yourself to living indoors, housebound?

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@merpreb – Merry, I am not housebound, but I totally avoid certain things at certain times. For instance, Spring is beautiful but dangerous for me, I used to get a really bad sinus infection and bronchitis every year during Feb – May. At other times of the year as well, but this was pretty much a sure thing! I love nature, working in the yard, planting new flowers … but I decided it isn't worth weeks of misery … So I don't go into the yard or walk outside … I also use a fan in the house and my husband changes the filters (special ones) every 6 weeks. We do this throughout the year. In the car, we keep the windows closed and recirculate the air. We immediately take off our shoes when coming I the house, to avoid bringing in any pollen … This is particularly true during the Spring, but Fall is a pretty bad period as well!

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@danielad

@merpreb – Merry, I am not housebound, but I totally avoid certain things at certain times. For instance, Spring is beautiful but dangerous for me, I used to get a really bad sinus infection and bronchitis every year during Feb – May. At other times of the year as well, but this was pretty much a sure thing! I love nature, working in the yard, planting new flowers … but I decided it isn't worth weeks of misery … So I don't go into the yard or walk outside … I also use a fan in the house and my husband changes the filters (special ones) every 6 weeks. We do this throughout the year. In the car, we keep the windows closed and recirculate the air. We immediately take off our shoes when coming I the house, to avoid bringing in any pollen … This is particularly true during the Spring, but Fall is a pretty bad period as well!

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@dalielad

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