Discussions

Hello everyone,

I'm new to the Bronchiectasis & NTM community and wanted to introduce myself. I have recently started learning more about bronchiectasis and NTM and I’m here to better understand the condition, treatment options and day to day management.

I’m especially interested in hearing about others’ experiences,what has helped you manage symptoms, any tips for maintaining lung health and how you navigate treatments or lifestyle changes.

It can feel overwhelming at first so I am really glad to have found a space like this where people share knowledge and support one another. I’m looking forward to learning from you all and contributing where I can.

Thank you in advance for any guidance or advice!

Best regards,
wajo23

I am a newly diagnosed case of bronchiectasis. So far, no NTM present. Yesterday, all of a sudden, I had severe chills, body aches, fatigue, and fever. As the afternoon progressed, my chest and entire abdomen started to hurt, and it was somewhat painful to take a deep breath. It was incredibly painful to cough. I went to an urgent care, where they did an X-ray that did not indicate pneumonia or anything else abnormal. They also ran a urine test to check for UTI. A sputum sample from about two weeks ago had indicated haemophilus, which my pulmonary doctor chose not to treat because I was feeling okay. The attending PA at Urgent Care prescribed doxycycline, which I started to take last night. Today, the fever is mostly gone, and the pain has subsided. No issues breathing. The fatigue is still present but not as bad 24 hours ago. My question is, is abdominal and chest pain, radiating also to my back, typical of an exacerbation? I have never had that sort of pain before, it was intense, and I was rather scared. Any advice on your experiences is appreciated. Thank you.

I have recently been diagnosed with mild bronchiectasis. I am reading what i can online about it, but there is just so much to take in.. When i'm well i don't have much of a cough, and then when i do cough its very dry, and difficult to bring anything up. I want to get into a good daily routine but just finding it hard to get into and understand whats best for me, feels like ACBT doesn't clear anything (i had a 30min chest physio app to show me this). With two young kids its so hard to find time for myself and I'm starting to realise with bronchiectasis its important to find time for yourself to be able to manage things well. Any reassurance that things will get easier to understand and how best to manage self care when feeling a bit lost at the start would be appreciated!

I was diagnosed,6 days with bronchitis.What type food can i avoid?

2.What type of exercise should I do?

3.When shall i visit my Doctor.

Note:

The medication really stopped the bleeding and mucus but I still have little cough.

Hi all,

I just found this site after a late night googling rabbit hole. I'll try not be too long-winded.

I was diagnosed last year, after a bout of pneumonia, which led to an incidental finding on an xray and then ct scan. At first my Respirologist mentioned mild bronchiectasis (which my new NTM specialist says she doesn't even see), but it also looked like there was infection, which was only diagnosed through a biopsy in August. The NTM I have is m. xenopi, which I have found some research on, but also sounds like a bad one to have.

I have no symptoms (other than feeling tired, which I have felt my whole life). Actually, since all this happened, I have been less sick, and felt better overall than ever... the first thing respirologist did was take me off steroid puffers, and I have surprisingly been breathing great for 7 months, and just tested negative on the methacoline challenge (apparently no asthma).

My issue now is the idea of starting treatment. I initially didn't want to, since I wasn't sick and I imagine the experience on antibiotics for a year and a half will make me sick, but the new specialist strongly suggests starting, as I am young, and this can just keep growing. I will note that I have two cavitary areas (I think they're maybe small, but everything I've read about this scares the crap out of me). For now we have agreed to rescan in the next 1-3 months (last scan was 6 months ago), to have more info and updated imaging and if it has gotten worse, to start meds.

I am also frustrated and overwhelmed as we do not know why I ended up with ntm, but the current theory is immune dysfunction, as evidenced by history of asthma, eczema and food allergies. The specialist also wonders if I have some genetic component linked to CF (which I also thought of after doing more reading), but that it isn't worth testing for and it probably won't show up.

I already started with lifestyle changes, including avoiding all steam (which I used to engage with regularly), trying to boil/treat most of my drinking water, and tried using aerobika and airway clearance techniques (but I never bring up anything).

At this point I am feeling hopeless, even though the Dr's tell me I'm young and will tolerate it fine, and will likely be able to get rid of the infection.

Curious to hear from anyone about their experience, especially anything positive/hopeful, and specifically from anyone on the younger side who treated without any symptoms.

Thanks so much for listening.

I'm newly diagnosed with Bronchiectasis and as part of the follow up I was tested for TB/NTM, this has shown negative for TB but I've been found to have 3 different NTM infections which were all discovered from a single sputum afb smear/culture, is this the norm for bronchiectasis patients? Also curious if anyone else has had multiple strains at the same time and what the procedure is regarding treatment, any advice on questions I should ask at next follow up appt would also be of great help as I really have no idea regarding all of this.