Discussions

I was just diagnosed with sleep apnea. I need advice for cleaning the CPAP. I don't have the equipment yet but I wanted advice from people with Bronchiectasis.

What are some of the preparations that you do in order to make traveling easier or safer? What challenges with travel have you faced in the past?

Has anyone experienced numerous false negative sputum sample results before they found the right Doctor/Laboratory?

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?

Managing chronic lung conditions like bronchiectasis and NTM can be an all-encompassing task. Many patients’ primary concern is clearing their airways. What other things do you do daily or weekly that you believe help manage your condition or improve your health? Have you made any nutritional, exercise, or other health and wellness changes since your diagnosis?

My cough is dry in the morning and gets better throughout the day.

I have been coughing constantly since last January. My pulmonologist is sending me to an ENT who is at a voice center. I'm wondering what to expect. I read about the center and found cough training listed but not much information.

More diet tips

I am new to this site. Does anyone have information on the mold Rasamsonia Argillacea? I have just had that mold show up on a sputum sample and haven't been able to find much information on it. I understand that it's a really difficult, year long treatment on 2 antibiotics without a great success rate. Thanks for any help on this

COVID vaccine

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?

Have you talked to your family about your condition(s)? If so, what details did you share? Any advice you can give to others who may be planning to share the news with their loved ones?

Hi all, thanks to those of you who joined our Coffee Break yesterday! With St. Patrick's Day in just a few weeks, I am posting some recipes that Ksmiles123 has shared (thank you, Ksmiles!).

Do any of you have St. Patrick's Day recipes you're willing to share? Any fun, family traditions?

What were the first symptoms that you noticed? How long (after the onset of symptoms) did it take for your diagnosis to be confirmed? Were you diagnosed with bronchiectasis, NTM, or both?

My pulmonologist is choosing to not give me antibiotics. I think because my lung function is still normal and I don't have a lot of symptoms other than a couple coughing bouts per day. He did give me a nebulizer which I use every day and a flutter device. My culture was negative but he still thinks I have MAC but not a bad case. I run almost every day and have no issue with fatigue. I'm kind of confused by it but I think he's worried that the antibiotic regimen will be too much for me. I was thinking maybe I could do the 3 per week antibiotic.

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 have any thoughts about it?

On Tuesday I have an appointment with GP to ask if my puffers need to be changed but I'm not sure if I will make a fool of myself asking him because from what I gather it is normal to be breathless when active.

My niece will soon be getting a bone marrow transplant. I realize that my NTM is not considered infectious to others, but are there any exceptions? I would like to help with her post-transplant care, but that is when she is most vulnerable to infection. Is she at risk of getting NTM from me when she is so immunosuppressed?

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 safe place - no judgement, just trying to understand how different people manage their symptoms.

I found a long time ago that the best way to learn about an illness is to ask the people who live with it. My patients have taught me more over the years than any text book

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 they did a CT scan and diaganosed Bronchiectasis. Things went well until January of this year when I started running fevers that have persisted to this day although the fevers are now below 101.4.

My big issue is having to deal with the mucus that I expel after each vest and nebulizer treatment (I do three treatments daily with the vest for 30 minutes at 80%). My nebulizer prescriptions are three treatments of Ipratropium Bromide and two treatments of Budesonide (my middle vest treatment is only with the Ipratropium Bromide). I also take twice a day 400mg of Mucinix to help break up the mucus.

Being an laryngectomee (throat cancer in 2011-2012), I am wondering if any fellow laryngectomee or some one with bronchiectasis has found a treatment that better addresses the bronchiectasis and the running of a fever every day.

I am hoping that someone can assist me in finding a treatment program that will make my bronchiectasis more manageable especially for long distance traveling, which my wife and I did prior to the pandemic.

Pray that everyone is exercising common sense during this pandemic.

Rush Stuart

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 antibiotics reduced the growth of the culture.

has anyone had that experience? Does anyone know who is correct here? I have all the symptoms and the profile for NTM

We would like to know if you would be interested in joining an informal meet-up on a group video chat (like Zoom). We know, with the COVID pandemic everyone is home and socializing is at a minimum. Would you like to meet other BronchandNTM360 participants and chat about what is happening these days. Or if you have a specific question you would like to discuss, let us know!

Hi all,

Sharing a podcast featuring Dr. Peadar Noone, who is a Professor of Medicine in the Pulmonary Division at the University of North Carolina at Chapel Hill. The podcast covers important information on both, bronchiectasis and NTM. Enjoy!

https://www.med.unc.edu/medicine/news/chairs-corner/podcast/unc-bronchiectasis/

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 have not really been out anywhere since March 15 my husband has serious heart disease.

Anyway, Since being quarantined, I am finding my symptoms are getting worse. Our apartment has a humidity problem. We are using a dehudifier, but the overall air quality seems bad. We live in Dallas which has very humid weather and many days where the air quality outside is too bad to open windows.

Are others dealing with this? I was surprised not to see a conversation about air purifiers more recently than several years ago.

We have been working with the management here, but they are slow. We are doing all the cleaning etc., use non toxic cleaners etc.,Ceiling fans etc, but I still do not feel as good as I think I should.

Any thoughts or suggestions would be very helpfu
Thanks

GG

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 morning and night and 2 puffs of Bretaris morning and night.

If this is what mild is like I feel sorry for those who have Bronchiectasis much worse.