Bronchiectasis in teachers & health care workers

Right. I know for myself I fit all of it- frequent bronchitis and pneumonia, pectus, body type ( except I’m short not tall), teacher in poverty area ( Canadian border of NH), and exposure to birds and the outdoors as a child. They took one look at me at said I was “textbook” MAC ! Oh joy!! I think perhaps body type lends itself to a genetic factor. All I know is that we who have it and bronchiectasis and any other lung bacteria or fungus that is ongoing, would be grateful for a cure as I’m sure any other person with a difficult disease would hope for every day. Irene

DXd w/mild BE + MAC 3 years ago at age 67. I was an ER nurse in my early 20’s then Realtor (selling some very old often blighted buildings in New Orleans). I have “mild” cases of chronic sinusitis, lower BMI, pectus excavatum, and mitral valve prolapse. My conditions seem to fit the suggested profile-

Right, @lolaf I think you fit the risk factors, as do I. The NTM or MAC doesn’t at this point, but who knows down the road.
Now that I’m aware because of the knowledge I’ve gleaned from this forum and research I’ve done, I make choices. So important to still enjoy life, but it is different. We have to make decisions to mitigate some big risk situations.

@irene5 I hope there is a cure and antibiotic development that will target some of the uncommon bacteria and other fungas etc that colonize people’s lungs.

I’m wary about AI at times, but on the other hand AI assisted research projects could possibly determine how untreated infections and inflammation can lead to Bronchiectasis and possibly decrease the number of ‘idiopathic’ diagnoses of bronchiectasis. More awareness would be raised too and earlier treatment.

It would be amazing if AI could assist with development of new antibiotics. mRNA research is working at developing vaccines that might help too. Let’s hope this science will make a difference.

Yes indeed!!

I am also a retired RN of 30 years, age 63. Just diagnosed with BE (1 year ago) and MAC in June ‘24 by bronchoscopy; after CT scans every 3 months for a year revealed worsening pulmonary nodules. I had pneumonia by chest X-ray almost 2 years ago. It was treated with a simple 5 day Z-pack. Incidentally, a baseline chest CT was recommended due to my strong family history of Lung Cancer. My Mother, Father, my sister and 2 brothers all died of Lung cancer. I am starting to have panic with my recent diagnosis. I just started antibiotic treatment 1 week ago (10-28-24) for MAC. I just discovered your group yesterday and no longer feel like “the Lone Ranger.” Thank you, all!

I think that we need to think about awareness by providers as an exercise in probabilities.

When it comes to lung conditions, depending on age, symptoms and general health, the most common causes are considered and treated first - in order of commonality, these would be virus, bacterial infection, allergy, asthma, sinusitis or GERD causing drainage to the lungs, COPD, Emphysema or chronic bronchitis and lung cancer, each of which affects millions of people in the US, and is seen daily by primary providers. These are the conditions that should be top-of-mind when they see patients.

Way down the list, each affecting one-half million people or fewer, would be Bronchiectasis, Pulmonary Fibrosis and Cystic Fibrosis. That is where specialists come in - they have the training to diagnose and treat these rare conditions.

Just to put a number on it, there are an estimated 350,000-500,000 with Bronchiectasis in the US and about 100,000 or so with NTM. In comparison, there are 25 million with Asthma, and about 15 million each with COPD or Emphysema/chronic bronchitis.

Primary medical care is too overwhelmed and understaffed to expect them to know everything, or even to have the time to learn and use every diagnostic tool or medical article that comes along.

I think where the under-diagnosis comes in is with primary providers who are reluctant to order more diagnostics (insurance issue) or to recognize they need another set of eyes, or with practices that are afraid of insurers and their response to "too many referrals", or patients who resist referral due to costs or the hassle of getting appointments.

There are no easy answers here, but adding more to the primary care burden is just not likely to be fruitful.

Please, please don't panic! We're here to provide encouragement, share experiences and send virtual hugs. Each of us will admit to fear, panic, confusion in the early days after diagnosis. But we eventually learn what works for us and how to live with our "new normal", and many of us are leaning on 5-20 years of experience and still here. I am typing one fingered with my dominant arm in a sling, so I can't give you my usual links. But if you search in the search ox above for ABC's of MAC and Bronchiectasis" and "MAC is defferent for everyone " you'll find some basic info.

Also, we rely on daily airway clearance as one of the basics in managing Bronchiectasis long term. Have you learned about it yet?

Thanks @sueinmn I agree with your statement below, especially as it pertains to the US. I think it might be just good luck if you have a primary care doctor who knows something about the condition. MAC is even less common as you have said. My doctor has become more aware now and has promised to give patients earlier access to specific tests. It would have made a difference in the trajectory of the disease for me and I suspect others might be in similar situations. Any increase in awareness will help others.

“I think where the under-diagnosis comes in is with primary providers who are reluctant to order more diagnostics (insurance issue) or to recognize they need another set of eyes, or with practices that are afraid of insurers and their response to "too many referrals", or patients who resist referral due to costs or the hassle of getting appointments.”

I do agree with you so that it has to do with exposure. After 40 years in education and some of them spent teaching kindergarten and spending time on a playground with the dirt being kicked up as they play, the environmental conditions of anyone in that environment, not only has the exposure to the illnesses of the children, the cleanliness or lack there of of the facility, but also the condition of the amenities, such as lunchroom playground, etc. I suspect nursing has some of the same issues. Along with research into frequent exposure, connections to the types of occupations would be helpful in improving insurance coverage and health conditions, as well as perhaps the training for general practitioners to be alert to people in those occupations.