Newly-diagnosed with Bronchiectasis and shocked

I have bronchietasis and MAI and was advised to stay away from steam and hot showers. I always thought hot showers were good especially if I had a head cold. That’s the way I was raised. I try to avoid all steam even from the dishwasher or sink. Now I jump in the shower using the long type of shower head that I can remove so it doesn’t spray in my face. Wash quick and get out. My ID doctor said just make it quick. I am not being treated as yet but he had me do a CT scan and will talk to him next month. I am really worried because I really Do Not want treatment. Can anyone advise if they do not receive treatment and how it has progressed.

The way I was diagnosed was by having a bronchoscopy. I had no tissue damage and no cavities in my lungs. They also did not find any bacteria in my lung when doing this procedure. They did biopsy a nodular in my lung that then grew the bacteria. That is the only way they found it. I thought after the test I was clear but after about two weeks the Doctor called me with the news. Just so you know sometimes very hard to diagnose. I was also told not to use a humidifier or anything with water . I do have air purifiers throughout the house now with Hepa filters. I had a chest X-ray in 2016 which showed nothing wrong. Then in August of 2021 it showed bronchietasis and mild lung scarring. Doctor said the bacteria could have gotten in my lung years ago.So will never know which is frustrating. Thought I was so healthy and did everything right so something like this wouldn’t happen. I wish you the best of luck.

Hi discerning. “

In response to @discerning1 …. I was also shocked when diagnosed with bronchiectasis as I had no history of repeated lung infections, asthma etc., at the time of my diagnosis. The pulmonologist I met with at Mayo (Rochester) immediately started me on nebulizing albuterol and 7% saline solution two times daily. That was 5 years ago. I have had a few minor infections which cleared with short courses of antibiotics and my doctor added a smart vest to use while nebulizing as I do not produce sputum easily. So far, no major infections. I am careful, but do not take precautions like air purification systems, or cleaning the showerhead. I do not use a whirlpool and continue to always wear a mask when indoor any public place. I live where there are very few guidelines regarding masking. I know I follow many of the things other people talk about but I can’t remember right now. I was much more anxious about bronchiectasis when first diagnosed than I am now. I take care of myself and it seems to help my lungs do the best they can. How long that will be is anyone’s guess but I will continue to do the best I can. Eat well, do some daily exercise (within reason), try to keep my stressors within reason, and manage my health. Good luck in your journey.

How difficult to be seeking medical care in your second language, especially for an uncommon condition, with which few doctors are highly familiar.
If you have few or no symptoms, sputum cultures are typically not taken in this country, I cannot say what is the French or EU protocol.

If you have a cough, phlegm and occasional shortness of breath, it may be to your advantage to begin a prophylactic program of airway clearance to keep your lungs as healthy as possible.
If you are easily able to bring up the mucus from coughing, simply learning the "Huff Coughing" technique may be enough. You can see an example here: https://www.youtube.com/watch?v=8UKd-GRNUFk
If you have trouble getting the mucus out, you may need to progress to nebulized saline solution, or to a PEP (Positive Expiratory Pressure) vibratory device to help you. You can read a lot about each of them here on Connect.
Finally, if shortness of breath is an issue, you might be prescribed an inhaler to help keep airways open.

Is it possible for you to find a physician to whom you can speak in English, or to bring a translator to your appointments? Or to send a list of questions to the doctor in advance and get a written reply?
Sue

Dear discerning1,
Not everyone with bronchiectasis also has a NTM/MAC infection but you won't know unless you get a sputum test. Because I was asymptomatic - no coughing, no shortness of breath, no fatigue, etc., I had no idea I had bronchiectasis or MAC until I got a CT scan and sputum test. And even if you have a MAC infection, you may not need to be treated with antibiotics. A disciplined airway clearance regimen might be enough to clear the lungs of mucus and deprive NTMs of a warm, welcoming environment to nest and thrive. I found this talk by Dr. Gwen Huitt at National Jewish helpful about when to be treated with antibiotics and when not to: To Treat or Not to Treat

I'm with you. I thought I was so healthy too--and did everything right--but here we are....

@discerning1 and @karissy I think most of us were shocked by our diagnosis. I certainly was frightened when the pulmonologist dropped the diagnosis on me and told me "you can look it up on the Internet" - and I started to search. What luck that I found my way to Mayo Connect and got so much support from the other members here!
I want to let you know that things are not as dire or scary as they might feel right now.
Here are the things I have learned:
Not every infection requires antibiotics - there are guidelines for treatment, and many more conservative approaches available in some cases.

Many doctors, even pulmonologists, are unfamiliar with bronchiectasis. It is important to find someone familiar with it, or at least willing to consult the experts.

Bronchiectasis, according to my second & wonderful pulmonologist, is a condition you can live with, often for a very long time, by making some lifestyle changes to stay healthy.

My 4 big changes were - stay out of and away from hot tubs, use extreme caution with soil, peat & mulch (I'm an avid gardener), do daily airway clearance, and stay healthy with diet, exercise & avoidance of sick people. Even before Covid, N-95 masks were my friend during flu season & when doing emergency daycare for little grandsons when ill. Other people, whose disease is perhaps more severe than mine, or by nature are more cautious, take more precautions. You will need to figure out what works for you.

Airway clearance has been my best tool, and I learned about it here and through National Jewish Health (NJH) videos. The approach to airway clearance depends on the severity of your disease. In my case, there a 5 "tools" - mucolytics to thin mucus (Mucinex 600 LA & N acetyl cysteine 600 MG 2xdaily), daily 7% saline nebs, lots of water, huff coughing to bring up mucus, and if needed a PEP vibratory device (Aerobika is one) to loosen the mucus.

What recommendations did you get from your doctor when diagnosed?
Sue

Hi Sue, I just want to vent. I don’t know how to do it right just put it here. Called Mayo Clinic Jacksonville b/c these is closer to me tried to make appt. 2x already and talk to same lady and said their full. So I told her she can give me appt on waiting list but she was so ugly to me she said oh it’s you again. She remembers my name and she said I told you we don’t have anything ,won’t talk to me anymore and hung up. Thanks for reading these. Cila

Oh dear, Cila. That must've been an unexpected and unpleasant encounter. Even if capacity is full, you have come to expect (and deserve) good customer service from Mayo Clinic. I strongly encourage you to contact the Office of Patient Experience. They will want to know what happened and how this can be remedied to maintain our standards of service.

Mayo Clinic Office of Patient Experience
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu