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Do you practice airway clearance techniques?
Hello! This question is one that I have based on a discussion from the Coffee Break time we had earlier this week. Do you practice airway clearance techniques every day? If so, what works best for you? If not, would you share why you don't? This is a …
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2
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NTM physicians in WASHINGTON state
Can anybody recommend a doctor in northwest Washington who has experience with m abscesses? Preferably Seattle or Bellingham area?
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5
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time to stop meds?
I've been told I will stop meds next month. I haven't talked to ID doctor yet but am curious. Do you stop cold turkey or wean off of them?
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2
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NTMers: How often do you have lab / bloodwork done?
Every month I get a CBC, plus kidney and liver function checks, ordered by my infectious disease doc, and I assume you all do too. For those of you who have been treated for 2 or 3 or more years, did the monthly lab work continue throughout treatment?
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6
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Share Your Story - Travel
What are some of the preparations that you do in order tomake traveling easier or safer? What challenges with travel have you faced inthe past?
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5
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How to know?
How do you know when you are having a flare up of bronchiectasis? I also have very severe COPD (FEV1 = 21%) so I haven't been able to figure out which disease is flaring. I asked my Pul. and he just said "you're breathing will get worse". Well, duh. I …
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12
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Has anyone used Acapella therapy?
If you have used Acapella therapy for bronchiectasis, have you found it useful? I understand they are not really able to be cleaned, so how often do you replace the unit?
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8
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Arikace
Hi cicimac! I believe that Arikayce offers an AriKares program. They company asks you to fill out this form with your physician. They market that they will help you to find the lowest cost. Download the form with the link I am providing to you and …
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24
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Covid Vaccine - Life After
For those of you that have received your Covid vaccine, have you been able to enjoy more “peace-of-mind”? What activities are you planning to do now that you are vaccinated?
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Advanced Lung and Bronchial Support supplement by Dr. Sinatra, any experience/thoughts?
Hello everyone and Merry Christmas/Happy Holidays. It's been a while since I've been on, hope all is well... I have a quick question. Has anyone in the community ever tried Advanced Lung and Bronchial Support supplement by a Dr. Sinatra? If so, do you …
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7
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Does a sputum sample have to be completed in the morning?
My cough is dry in the morning and gets better throughout the day.
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Pulse Oximeter Recommendations
Does anyone have recommendations for a reliable, over-the-counter Pulse Oximeter? I was diagnosed with mild bronchiectasis last year. As everyone can relate, this diagnosis has made the pandemic especially difficult. I've been extremely careful about any …
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7
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Has anyone had experience with using ultrasound treatments to reduce lung inflammation:
I am at a more advanced stage of bronchiectasis, so I am always looking for ways to reduce inflammation/mucous. I am currently using a Healthy Wave PEMF mat (electromagnetic pulse treatment), which has been helpful in reducing mucous. I also just came …
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pseudomonas pneumonia causing shortness of breath and difficulty wearing face masks.
Am undergoing IV Cefepime treatment with prednisone for pseudomonas pneumonia along with Amikacin nebulizer treatments (28 days on/ 28 days off). Having episodes of dyspnea from walking/talking making it almost impossible to my wear face mask. My nurse …
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15
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Aspergillus fumigatus
My pulmo told me before I show antibodies for aspergillus some years ago but that he wouldn't treat it as we pick it up in the air. I guess its easy to do. Noticing on my ct scan of the end of April that is shows aspergillus on that too. So when I had …
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1
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Cayston
Is anyone using Cayston to treat pseudomonas? Is made by Gilead,
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1
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Scheduling 3 antibiotic regimen
Hi all! I'm new to the 3 antibiotic regimen; having just begun the three-day-a-week protocol. Does anyone have any advice for me regarding the scheduling of the meds in combination with the prescribed probiotics and now the addition of carafate for …
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10
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For those still wearing masks, please consider the following.
I came across a Washington Post article in early October about finding the best (safest) face masks and followed up, checking various resources in the article. One stood out particularly -- his name is Aaron Collins and he is a mechanical engineer who …
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Anyone ever used suction machine at home to get rid of mucus?
'this is so weird I talked to my lincare supplier Rt today about trouble with my vent we talked about several things one of the afflovest maybe I can get approved for and he brought up this suction machine I cant remember the name of it. He as calling my …
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3
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Anyone used the Johns Hopkins & U. of Maryland Research Team mortality calculator?
I found this on my state's COVID information hub. It's meant for unvaccinated, uninfected individuals living in the 50 states to assess their risk given their medical/health conditions. If you know anyone with bronchiectasis (it's one of the conditions …
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10
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Share Your Story - Mental Health
Maintaining a positive attitude when you have bronchiectasis and NTM can be challenging. What types of activities bring you joy or improve your mood?
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6
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still breathless but told OK
My Bronchiectasis has improved and my lung specialist has told me my lungs are good but I don't understand why I still get breathless when walking up an incline, or doing chores. (he doesn't have an answer) I accept that I am very mild so why does this …
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13
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Share Your Story - Airway Clearance
What airway clearance methods, techniques, or devices work best for clearing mucus from your airways?
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5
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Experience with Brensocatib
I read an article that this was a FDA breakthrough therapy. My doctor is unfamiliar with its effectiveness. Have anyone use the drug and been able to discern its effectivenss
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2
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What would you do: choose clofazamine or quality of life?
i am multi drug resistant with bronchiastasis. My doc wants to add clofazamine but i declined, choosing mainenance therapy and quality of life. Want to know if others have been faced with this decision.
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