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11
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Does BE partial or complete lobe reduction reduce exacerbations and improve quality of life?
Good afternoon All! I havent seen mentioned lobe reduction surgery as a possible way to aggressively intervene to remove the BE area of the lung where fluids and bacteria accumulate and bring on exacerbations. Has anyone had this done and does it help? …
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3
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MAC, Bronchiectasis and CPAP
I just learned I have sleep apnea and am being fitted with a CPAP. What do I need to know about using CPAP as it relates to my MAC and bronchiectasis? It seems like disinfecting may be a problem. I don't think CPAP mask, tubing, etc can be boiled like my …
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5
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Monitoring air quality inside
Hi, I am new to the forum, but have lived with bronchiectasis for several years I am fortunate because it is mild and I actively work hard to stay well. We sold our home and have opted to live in an apartment in a walkable area Laughable now since we …
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5
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Fellow Laryngectomees & Treatment Program
I was diagnosed with Bronchiectasis in March 2019 just after I completed 5 months of chemotherapy for MCL (mantle cell lymphoma). During the treatment I had a couple of bouts of running fever so the doctors thought it might be pneumonia. After two bouts …
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1
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MAC & abscessus/bolettii, treating MAC...?
I'm being treated for MAC. My latest culture was negative for MAC so I will stop treatment in April. However it still show abscessus.....I still don't understand why this is not being treated. Is it possible for the abscessus to not be dominant and, …
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1
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Can a broncoscopy culture For NTM be a false negative?
Just just four I have bronchiectasis. Had a broncoscopy to culture for NTM. It was negative. The pulmonologist says that is the definitive test. The infectious disease doctor says it needs to be repeated because I was on antibiotics at the time and the …
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8
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Advice on Nausea Side Effects.
I've also read (University of Texas) that rifabutin might be substituted for rifampin for those who can't tolerate the rifampin. Per Wikipedia, rifampin is the same as rifampicin. Check with your doctor. They are all part of the rifamycin family …
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Puzzled. Am I normal P.S.
Adding to my question I have been breathless for most of 2020. I have had asthma since I was 7 but it was never a problem. I use Ventolin before I go for a walk but still get breathless and have to keep on stopping to rest. I also take 1 puff of DuoResp …
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19
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Anyone on here taking montelukast, ICS, or biologics?
I have taken singulair for years steroids of course and I get xolair shots every two weeks for allergic asthma since 2003. I don't have high eosinophilis.
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9
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Do others have recurring flareups in the form of pleurisy?
My most frequent exacerbations show up as pleuritic pain, sometimes accompanied by extra lung congestion, sometimes accompanied by fever. Usually 1 or 2 days of extra tiredness. I generally rest, apply heat, take Advil, maybe extra Mucinex. But I just …
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5
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Anyone taking Arikayce? At $13,000 a month, how do you pay for it?
Hope someone out there can help. I’ve been on heavy doses of 3 antibiotics since Jan of 2017 for MAC. Sputum still showing positive and showing on CT 3 weeks ago. My MAC doc prescribed Arikayce as an addition but the insurance company has denied coverage …
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4
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I am new to all of it... Bronchiectasis, NTM, New York resident in need of help.
Hi, I am glad i found this board. I am a 30 yr old male in New York City. I was born with pectus excavatum (sunken chest) which never gave me too many problems. I had about 4 pneumonias in my 20's... After the last pneumonia a year ago, i was given a CT …
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11
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How do you feel about states re-opening?
Are you ready to go out and about? Are you feeling anxiety about the masses? I live in Alexandria, VA and any store I go into has patrons wearing masks. I see images on the news where people are not social distancing and not wearing masks. How do you …
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2
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HUMIDIFIER - Warm or Cool Mist?
I'm wondering if it is helpful to run a humidifier while sleeping to aid in better sleep? If so, warm or cool mist? Only distilled water?
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4
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big 3 question
Is it unusual to take the Big 3 daily with no "days off"? I keep reading people talking about their "days off" but my understanding is that I'll be taking these drugs daily. There was no mention of "days off"
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6
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Flying with Bronchiecstasis
My husband wants to celebrate our 50th Anniversary in Hawaii. We live on the East Coast. I have flown many times, and have had bronch for many years. I never knew this I had it til 2014. Well now I do clearence, no cough, have had exerbations, and …
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Bronchiectasis and Tracheobronchomalacia
Hello, I have both Bronchiectasis and Tracheobronchomalacia (TBM). I do have a daily routine to keep my mucus thinned, but my bigger concern is the TBM. Sometimes my coughing is so hard trying to clean out the mucus that I've even caused petechiae eye. I …
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7
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Who uses Mucomyst? Please share experiences, thanks.
I used it for some years its strong and smells awful but it does the trick. I had the 2.0 I do believe. Some ppl it maybe to strong and really irritate the airways. Now I have hypertonic saline much better than this. There is a supplement that does the …
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1
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HCP and bronchiectatsis
How many on this forum are HCP with bronchiectasis? I am an RN.
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3
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I know indoor pools not advised -- is outdoor ok if don't put face in ?
Wondering what advice u got re outdoor pools.
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1
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Did your bronchiectasis go away on CT?
I got my first ct with contrast last may/june and it showed emphysema, mild, diffuse, bronciecstasis and lung scarring upper lobe, nodule and infiltrates.My pulmonologist remarked my spirometry in may did not look that bad considering my current year …
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2
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new diagnosis, so many questions..
My near 80 yr old father was recently diagnosed with Bronchiecstesis and MAC. He saw an infectious disease specialist today and she put him on the "big 3" on a daily regimen. His latest scan shows cavitation. So far his only symptoms are chronic cough, …
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1
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Big 3
I'm new here. Keep seeing Big 3. What is that?
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3
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how to take probiotic with Big 3 & safe to take vit. c,d, omega3 & zinc?
drug interactions with suppliments
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2
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What is the usual dosage for the Big 3?
big 3 dosage I feel like what I'm being prescribed is a bit high. I weigh 118 pounds and Rx is for 5 days. 600mg rifampin daily, 800 mg ethambutol 2x daily, and clarithromycin 500 mg 2x daily.
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