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Environmental causes of bronchiectasis?
I think this is an odd situation, but I'm going to post it and see if it's as weird as I think it is.
I live in Florida and was diagnosed with bronchiectasis and pseudomonas and a small appearance of Abscessus in May of 2023. My pseudomonas was treated then. I've had two bronchoscopies since then and a couple of sputum cultures and nothing has grown since then.
Two doors down from me lives a lady who was diagnosed with bronchiectasis with potential MAI about 4 years ago. She's never been further diagnosed other than with annual CT scans.
Next door to her is a lady who was just diagnosed with bronchiectasis and is now being cultured.
We are between 77 and 82, see different pulmonologists and fit the general profile for bronchiectasis patients. None of us have a previous history of lung diseases like asthma or chronic infections.
Is the fact that we live so close together just a coincidence or could there be an environmental factor in play?
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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Can anyone access this paper and post it to the group? Maybe a patient of Dr. McShane could ask her office for a copy?
I didn’t do everything right. I am not sure I even know what that means when it comes to lung health, but in any event I am sure I have been less than perfect. Nonetheless, I suspect my BE was caused by my MAC (not the other way around). I have a body type that is associated with MAC — tall, thin, mitro valve prolapse, pectus excavatum, scoliosis — and whether that creates a mechanical propensity or represents a genetic one is unclear. Just my working theory, subject to change.
Unfortunately, that paper is behind a paywall. Maybe one of Dr. McShane's patients can ask for it.
@bayarea58 interesting that you write - “I was recently reading a paper on BE and it made a distinction between the radiological finding of BE and a clinical diagnosis of BE, saying that over the age of 70 approximately 20% of the population has BE on CT as a normal sign of aging, without clinical relevance.”
A cardiologist mentioned that he was aware that more teachers and health care staff were diagnosed with BE. He actually said it is common and that caught my attention. I’m fairly certain though that he was speaking about a radiological diagnosis of Bronchiectasis.
Some of us would have appreciated that diagnosis before we got infections that weren’t treated with the proper antibiotics, because doctors weren’t doing sputum tests or CT scans.
It could have very well meant the difference between radiological diagnosis and the clinical diagnosis of chronic BE.
Of course, that would mean we would have been given a previous CT scan or at least an accurate reading of an X ray.
It would be helpful if radiologists and primary care physicians were more aware of what BE is and looks like and do more sputum tests at the doctor’s office when symptoms have been chronic.
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1 ReactionIt seems the experience and expertise are so widely variable and in my experience, even in the same hospital system. I was diagnosed with BE 12 years ago from my PCP hearing something in my lungs, sending me for a chest x-ray which was inconclusive with the radiologist recommending a CT scan where the mild BE with nodules showed up. However, my PCP told me it was "idiopathic" and nothing needed to be done since I was asymptomatic. Just repeat CT scans every 6 months for 2 years to make sure the nodules were stable (which they were). Eventually when I was diagnosed with Crohn's disease which is associated with BE, I started also going to a general pulmonologist to track the BE more closely. But, nothing was done until I started developing a chronic dry cough. My (now new) PCP was persistent in not letting that go (thank you!) and eventually I ended up at the NYU Bronchiectasis & NTM program. Eventually a CT reading said "consistent with MAC". The general pulmonologist sent me for a series of induced sputum tests which were negative (but also very small samples, I was barely producing anything then). But guess what? My previous PCP and general pulmonologist were also part of the same large NYU system here in NYC, a top hospital nationally, and although caring and highly competent overall, they were not proactive about the BE at all. I had no idea until my GI doctor was one who referred me, that there was a bronchiectasis program in the very health care system that was taking care of me. I believe I was either percolating NTM for a while, or was infected around the time I finally ended up with bronchiectasis-knowledgeable doctors because when they sent me to chest (respiratory) therapy and I started producing more sputum, it has been positive every since.
I have no idea how to understand such a wide divergence in knowledge in the profession. It seems that it's doctors who "take an interest" who end up educating themselves and each other and that's pretty random!
I've read that there was quite some increase in BE knowledge
in the last decade with BE-databases being set up.
Doctors typically "take an interest " in conditions they encounter more than once. BE and NTM are rare, and most PCP's very rarely see it. Most pulmonologists encounter at least 100 COPD and 100 asthma patients for every case of BE they see, maybe more. My first pulmonologist had only encountered 27 cases of NTM in 27 years in a large urban practice. It doesn't surprise me that there are few experts.
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3 ReactionsI have said and believe as you do also....and I am sure many of us that come to this site, due to our experiences with needing the right care and diagnosis of BE and MAC, have come to this conclusion....that which you said: "It seems that it's doctors who "take an interest" who end up educating themselves and each other and that's pretty random!
Barbara
Yes. As an example National Jewish Health has "partnered to create the Mount Sinai NYC - National Jewish Health Respiratory Institute." It is my understanding that Baylor in Dallas has opened a BE program. Things are changing and happening.. Wonderful that it is happening but also frustrating and sad that we find ourselves with a growing health problem here in the US and all over the world.
Barbara
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1 Reaction@blm1007blm1007 Yes, curiosity and a keen interest in diagnosis is crucial in a family physician. They are often very busy but they are also the first healthcare professionals we will see and talk to about our varied symptoms. Unfortunately those symptoms are sometimes quickly dismissed.
I’ve mentioned it in the past, but simple sputum tests, when there is changing mucus for a longer period of time, and perhaps questioning the X-rays and forwarding patients to capable specialists shouldn’t be too much to expect.
Thankfully some doctors are decent listeners and check the box for sputum tests more readily than some do. I’ve learned through this important site, that not every person with BE has to expectorate phlegm each day, but we don’t wake up overnight with Bronchiectasis.
Perhaps it could take a few years to finally arrive at a diagnosis of this chronic condition especially when there are untreated infections, coupled with other body type, conditions etc that look as if they make us more susceptible.
It seems other people have unfortunately struggled for many many years with other health issues and particularly with lung related health concerns.
I suppose some might be fortunate to find out early when there is only a radiological diagnosis of BE and the specific antibiotics to treat are given.
Although it is still a rare lung disease, relative to COPD and asthma, I like to think more awareness might help others avoid chronic BE or at least postpone the diagnosis for a number of years.
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