Discussions

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

Has anyone traveled recently (air travel) ? and if so, any complications?

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

I have Bronchiectasis due to Ulcerative Colitis(IBD). I am considering using a biologic agent (Stalera, Remicade, etc) as a possible treatment for the IBD/Bronchiectasis. I am curious if anyone on this board has IBD as a cause of their Bronchiectasis, and if they have considered biologics as a treatment option? thanks in advance

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.

Hi, my name is Elaine and I have the mildest form of Cylindrical Bronchiectasis.

I am breathless every day on exursion (fine when doing nothing). Often wheezy. Lately I have been bringing mucus up only once a day or not at all instead of numerous times a day.

I am waiting to do a Pulmonary Rehab course and I just wondered if the way I am is normal when you have this disease. I had a Cat Scan yesterday and am waiting to here results.

I read you should use good days to do chores etc but I don't have good days and I'm not even bad.

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, therefore, not need to be treated? Are there situations where it is not treated?

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 feel about re-entry?

Hello! I was wondering if anybody had ever tried Halotherapy (Dry Salt Therapy) for their Bronchiectasis? My Infectious Disease doctor suggested it as something to try.

https://www.saltchamberinc.com/salt-therapy-halotherapy/

Thoughts?

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?

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 scan and mild bronchiectasis was found in my upper right lobe (where my chest is sunken in.)

Throughout the last year I was in and out of the hospital for strange lung complaints such as crackles, feelings of mild illness, and mucus.

About 3 months ago I started to get nonstop mucus throughout the day, lots of it. I still didn't feel ill no signs of fever etc. so i went to get my first sputum samples. NTM MAC was found. I started the big 3 antibiotics about 10 days ago (3x a week) but still don't feel better.

I wake from my sleep multiple times a night from congestion in the chest and I clear my lung all day everyday. I usually have sweats in my sleep now. I am very tired of all of it.

Has anyone had a similar experience? My pulmonologist has been infected with covid 19 and I have no access to any doctors in New York until this virus settles down.

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 have read lately that this condition can be life threatening. I've read that this can cause heart failure.

1.Should I be concerned about this TBM or not? 2.Can hard coughing cause more damage to my TBM?

Hi everyone, my MAC is back for the third time and my local doc is talking to National Jewish about adding Clofazamine to my other 3 meds. It really looks scary the way it turns your skin colors 75-100% of the time. Has anyone else taken this. Are there patches of color or does it just turn all your skin a weird color. I still work part time with the public and volunteer at an animal shelter and I fear I will be confined to indoors. I sure wish I could find some pictures online of what my skin might possibly look like, but so far no luck.

Wondering what advice u got re outdoor pools.

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 (confusing). Don't assume doctors know any better as most doctors aren't that familiar with treating MAC because it isn't a common disease. Have the discussion and don't be afraid to ask the question.

Insmed is kicking off their branded Patient Ambassador Program and is looking for potential patients who are currently prescribed this medication and interested in sharing their story with others to help increase awareness of MAC lung disease and treatment. These stories may be shared in a variety of ways, including at speaking events, in media interviews, in videos, in advertisements, in print materials or on our website.

If interested in learning more, please email SharingMyTreatmentStory@gcihealth.com.

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 antibiotics clear these up. My problem is I have had bleeds. I never know when. They always stop if I stay calm.

I hate to keep my husband from his dream, but wonder how safe I will be on a plane. We would be flying in stages with 2 day breaks. I only worry if plane pressure will hurt or sqeeze my lungs....I know it seems foolish to question, but my doctor just said to go...You'll be fine.

Thank you