0 Votes
3 Answers
How cautious must you be with water?

Diagnosed with bronchiectasis & NTM abscessus/boletti. So confused as to what part water plays in this disease. I've read different things and not sure what's being too cautious or not cautious enough. One article recommended "whole house water …

Author: Tracer
0 Votes
6 Answers
Travel tips with a chronic condition?

Tis the season of travel. Do you have any tips that have made traveling easier while dealing with a chronic lung condition? Please share!

Author: Gretchen
0 Votes
2 Answers
Anyone else live 65 years after Bronchectasis Dx?

I was born in 1946. I was diagnosed with chronic bronchitis at age 4 after a few events of bronchitis and two of pneumonia - the first at three months. At six I was diagnosed with Bronchiectasis and my parents were told I would not make it through my …

Author: GaryL
0 Votes
6 Answers
What do you drink on a plane when boiled water or spring water is not availed?

safe beverages on planes and in rest

Author: SDP
0 Votes
5 Answers
Anyone using PALL Med filters on shower or taps?

Hello I have been recommended Pall med filters for NTM-Xenopi control in home shower and taps. has anyone used these or got advise on which ones are best?

Author: Loopy
0 Votes
4 Answers
ARICAYCE side effects

I have only been on this drug for 7 days but have noticed after each treatment my oxygen goes down and my heart rate goes up. My physician said at this time he is not concerned. Has anyone else had these side effects this early in treatment?

Author: JEG
0 Votes
5 Answers
Anyone have a sputum sample that cultured Mucor?

Hello Trusted Friends, My lungs are colonized with MAC Avium, HIB, m. Abscessus has shown up a couple times, a little Aspergillus, and now my most recent culture grew out a fungus called Mucor. I have m. abscessus in my sinuses, too. The ID doctor …

Author: BRigby
Tags:
0 Votes
11 Answers
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? …

Author: Greg
0 Votes
11 Answers
Young age at diagnosis

On one of my asthma support groups a 2 yr old was diagnosed I never heard of one that young.

Author: Rachel
0 Votes
3 Answers
Has anyone tried N-A-C or Quercetin (two different OTC supplement) to reduce mucus production?

Good morning! There was an article posted a while back that talked about NAC and Bronchiectasis, it may be something helpful with asking your doctor if it may be right for you. https://bronchiectasisnewstoday.com/2019/05/09/n-a...

Author: JayNYC
0 Votes
2 Answers
Hypervolt instead of a Vest or chest PT?

Has anyone tried using Hypervolt instead of a vest to improve chest clearance. i discovered it through a physical therapist for back pain, but the 'banging' movement of the tool reminded my of the chest physical therapy i received a while back. …

Author: JayNYC
0 Votes
1 Answers
Settings for afflo vest (and a bit of grumbling)

I have hil rom mine i set on 14 for 20 min 2 times a day. Do not know if they have settings the same. I was told by a copd rep at the hospital in Sept for me to do levelalbuterol is generic xopenex then hypertonic 7% saline then do the vest. It does work …

Author: Gladys
0 Votes
5 Answers
Do you use tap water for NeilMed when traveling in Europe?

I've been told that distilled water is best to use with NeilMed, which I do at home. But how do I manage that when traveling in Europe? What type of water do you use at home and when traveling?

Author: CheriM
0 Votes
1 Answers
Any contraption or non-medical device that improves your quality of life?

Do you have any item, like a de-humidifier, etc. that has a positive impact on your quality of life while dealing with a respiratory disease? Any recommendations?

Author: Gretchen
0 Votes
2 Answers
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 …

Author: Jenny
0 Votes
1 Answers
Having side effects with both rifampin and rifabutin. Anyone using an alternative to these?

Hello, my first time on this blog! In 2017 I began the 3-drug regimen of azithromycin, ethambutol, and rifampin. After 12 months with no side effects, my platelet count suddenly began dropping, which was attributed to the rifampin and I was taken off it …

Author: izzie
0 Votes
1 Answers
Tried everything and still lots of coughing?

I found a you tube video by Dr. Robert Bastian. He talks about a type of cough that is exactly what I have. His presentation is called Coughing That Won't Go Away. Has anyone seen this Doctor (near Chicago) or tried the medications he suggests?

Author: redhead
0 Votes
1 Answers
CEO Women with NTM

Women with NTM and high level jobs . ( CEO, Managing director , etc ) . How do you get through your long stressful days coping with your disease?

Author: C123456789
0 Votes
4 Answers
Hi Everyone, My Mom was diagnosed with Bronchiectasis a year ago. I need some answers.

I am wondering if they took a sputum sample to check what bus she may have? I was diagnosed 2014 but have asthma and emphysema.I am sure my bronchiectasis was caised from many lung infections. Xopenex neb followed by 7% hypertonic saline then go to the …

Author: Kat67
0 Votes
3 Answers
What exercise are you doing today?

The patients and physicians at the recent Bronchiectasis and NTM conference in Texas implored all patients to exercise-saying it is a Critical Necessity!! What do you do on a daily or weekly basis to move your body and help your condition?

Author: Gretchen
0 Votes
12 Answers
Cannabis for Bronchiectasis?

Hello, I am looking for different treatment options for my mother who has Bronchietasis. I was wondering if anyone has tried cannabis (cbd oil, edibles, etc.) for their Bronchietasis? Obviously I feel like smoking cannabis would be counter productive but …

Author: Jadew
0 Votes
8 Answers
What suggestions do you have for managing my Bronchiectasis?

Recently diagnosed after ten years of “chronic bronchitis.” Prednisone and antibiotics knocked it out until last two years. My recent blood work shows compromised immune system, probably from me taking too much prednisone over last two years. Sputum …

Author: Greg
0 Votes
5 Answers
surgery and exercising

I was diagnosed last week with bronchiectasis. I am a physical education middle school teacher and am 49. I used to work out fairly regularly until I had to have a parathyroidectomy/thyroidectomy in the summer of 2017. It took half the year to get my …

Author: Sindy
0 Votes
3 Answers
Anyone know of Bronchiectasis doctor in Cincinnati or Phoenix area? Thanks much!

Recently diagnosed with BE and live in Cincinnati and Phoenix areas. Looking for the right physician who specializes in BE treatment and can let me know how to fight and manage this disease. Your help is much appreciated! Thanks Greg

Author: Greg
0 Votes
14 Answers
New to this diagnosis and overwhelmed!

Hi, I am very newly diagnosed with Bronchiectatis, Mycobacterium Abscessus, and Aspergillus. I am feeling a little overwhelmed to say the least. I will be going to National Jewish Hospital in Denver for a second opinion sometime in the near future. My …

Author: kwg
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