0 Votes
2 Answers
Does anyone have a top (or top 3) recommendation(s) for getting a second opinion or consult?

I was diagnosed 11/22 with NTM. In 2019, my PCP missed a bronchiectasis diagnosis from a coronary calcium CT scan. I went 3-1/2 years untreated & without airway clearance practices, no sputum til 2022. I had a bilobectomy in 5/23 and in 9/23 started …

Author: Chrism
0 Votes
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Do you know the early signs of an exacerbation?

The link below reviews the red flags of a possible exacerbation: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exacerbations

Author: Ksmiles123
0 Votes
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Are you planning on traveling soon?

The link below offers some suggestions for BNTM individuals who will be traveling over the upcoming months: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Travel

Author: Ksmiles123
0 Votes
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Do you practice meditation?

Practicing meditation improves the quality of life for many individuals. The article below from the Mayo Clinic explains the benefits of practicing meditation: https://www.mayoclinic.org/tests-procedures/meditation/in-depth/meditation/art-20045858

Author: Ksmiles123
0 Votes
5 Answers
Tinnitus

Hello. I am new to this site, but wanted to see if anyone can offer any input about tinnitus. I started azithromycin 500 mg three times per week and after one month, developed tinnitus and have stopped it. Does anyone have any experience with this and …

Author: Carmel
0 Votes
12 Answers
Bronchoscopy-Who amongst the bloggers has had a Bronchoscopy?

Who amongst the bloggers has had a Bronchoscopy and what did the results gain for you?

Author: Wolf
0 Votes
3 Answers
Drug Tolerance

How have people tolerated Clofazimine (Lamprene) and/or Amikacin?

Author: Woods
0 Votes
5 Answers
What Is Going On?

Question... I went from having no mucus or issues in 2023 to nonstop mucus every day. I was really sick in December but got well after a month of treatment. Since the beginning of March it has been different. I drink plenty of fluids, eat healthy and …

Author: Marcus
0 Votes
2 Answers
Lobectomy prognosis

My mother had her right upper and middle lobes removed 2 weeks ago today. She has emphysema/COPD and NTM, diagnosed 2013. She is still extremely weak and on home oxygen. Has anyone been through this or have a family member that has been through this? Did …

Author: DanielleMT
0 Votes
4 Answers
Traveling to Greece

I will be travelling to Greece this summer and will be purchasing a travel nebulizer. What nebulizer do you recommend? I also will not be able to disinfect my nebulizer cups and I read somewhere there are disposable cups. Anyone have any experience with …

Author: Dakota13
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0 Votes
3 Answers
elevated platelet levels

I have experienced higher than normal platelet levels since I was diagnosed with bronchiectasis in 2015. Has anyone experienced the same?

Author: Dragonlady
0 Votes
12 Answers
Are you taking Probiotics regularly?

The link below is the list of the top probiotics in 2023: https://www.healthline.com/nutrition/best-probiotic-supplement

Author: Ksmiles123
0 Votes
2 Answers
Have you been to a pulmonary rehab program? If yes, what was the best part of the program?

The link below discusses the key components of a pulmonary rehab program: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Pulmonary-Rehab

Author: Ksmiles123
0 Votes
7 Answers
I am going to be going for a salt therapy session. Any comments. Does it work on bringing up mucus

Salt Therapy

Author: Sher
0 Votes
1 Answers
Check-In: Rare Disease Day is February 29th!

A disease is rare when it only affects a small portion of the population. Even though each disease may be rare on its own, living with a rare disease is, in fact, quite common. About 1 in 10 Americans are affected by a rare disease. Unfortunately, most …

0 Votes
1 Answers
Nebulized Tobramycin

Has anyone gone through the nebulized tobramycin treatment that is being suggested by my doctor. From what I can find on the web, the 28 days on, 28 days off, and then 28 days of treatment seem to be relatively safe, with possible ear and kidney …

Author: oasisman
0 Votes
1 Answers
Have you ever had an exercise stress test?

It is important to have a thorough cardiac workup as we age. Different medications can affect our heart health; it is good to have a baseline stress test. Below is information on the procedure: https://my.clevelandclinic.org/health/diagnostics/16984 …

Author: Ksmiles123
0 Votes
4 Answers
High cost of Hypersal 7% nebulizer solution

Has anyone been able to get a months supply for less than $50.00? I got quoted a $30.00 price for 3% solution at Costco, but I need to ask my pulmonologist if that is as effective. Thanks

Author: oasisman
0 Votes
3 Answers
Inhalers

Do inhalers work? I was given albuterol and bevespi. They were suppose to help with breathing but feel that they do not. I experience a rapid heart beat after taking the inhaler. I have bronchiectasis and they think possibly COPD. Not sure if they know …

Author: Sher
0 Votes
6 Answers
I believe blood should not be drawn from a PICC line?

When we have a PICC line and have NTM and or abscessus, can blood be drawn from the PICC line or should we insist on getting blood drawn from the other arm? And why is it considered dangerous? Infection?

Author: Suepink1
0 Votes
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Are you doing Airway Clearance regularly?

Airway clearance is important throughout the dry heat of the winter months and the peak flu/ RSV season. Below is a video on the subject with Dr.Pamela McShane: https://m.youtube.com/watch?v=L-EHohMe7II

Author: Ksmiles123
0 Votes
7 Answers
Establish care with pulmonologist?

Hello, I was diagnosed with MAC and bronchiectasis, and referred to an Infectious Disease doctor. But I do not have a pulmonologist, which seems like it would be appropriate for bronchiectasis. Is it typical to not have a pulmonologist? And if I should …

0 Votes
1 Answers
Have you received the pneumococcal vaccine?

Below is information on the pneumococcal vaccine from the CDC: https://www.cdc.gov/vaccines/vpd/pneumo/public/index.html

Author: Ksmiles123
0 Votes
0 This question has no answers.
Are you cleaning your nebulizer devices correctly?

Below are videos on the different types of nebulizers and the different ways to clean them: https://www.copdfoundation.org/Learn-More/Educational-Materials-Resources/Educational-Video-Series.aspx

Author: Ksmiles123
0 Votes
5 Answers
Experience with Lung Health Supplements

I have doing research on supplements to my neublizing solutions to help me manage my bronchiectasis. My sister-in-law saw an ad for Lung Clear so I did some research and found other supplements touted to help with infections and mucus issues. Does anyone …

Author: Rush
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