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Bronchiectasis: New Diagnosis

MAC & Bronchiectasis | Last Active: Apr 15, 2023 | Replies (382)

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@joanng

Thank you for your reply. I’m not sure if they tested for mycobacteria aviums complex,
I will ask. I have not monitored my oxygen that would be logical. I know awhile back it was at 95%. I never heard of mycobacteria aviums complex until I became a member of this site.
Wouldn’t drs normally text for this without being asked especially being a pulmonologist? Or should I start being a stronger advocate for myself?
Joann

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Replies to "Thank you for your reply. I’m not sure if they tested for mycobacteria aviums complex, I..."

@joanng You asked "Wouldn’t drs normally text for this without being asked especially being a pulmonologist? Or should I start being a stronger advocate for myself?" The short answer is "probably not."

If you spend some time reading the various discussions in this group, you will see that not only do doctors not automatically test for MAC, even many pulmonologists have little experience treating it. Most all well-versed in treating asthma & COPD, but less so with bronchiectasis and the related treatments and infections.

Like many others in this group, I too had not heard of MAC or bronchiectasis until it was diagnosed, when I had severe pneumonia & what appeared to be "an intractable asthma attack for over 4 months" that were not responding to treatment. After a lung x-ray, a sharp-eyed radiologist told my primary what he suspected and that got the ball rolling on treatment.

That is why we encourage you to:

Educate yourself.
Here is one place to start: https://www.lung.org/lung-health-diseases/lung-disease-lookup/bronchiectasis/symptoms-diagnosis

Advocate for yourself.
Armed with the knowledge you gain, develop a list of questions to ask about your diagnosis and treatment. Many of us are treated in practices where there is a place to ask our questions of the physician on-line, so we can get answers between appointments, or at least s/he will know our concerns when we next meet. I found the doctor's nurse to be my best source of information and support.

Seek a practitioner knowledgeable about your condition.
I was referred to mine specifically because my primary knew he had a number of bronchiectasis patients, but I eventually switched to someone else whose style of practice is more compatible with a curious and proactive patient.

Let us know what you learn when you talk to your doctor.
Sue

@joanng Sue has said it best! I was diagnosed not by my PCP but by my daughter’s husband’s brother who is a retired obgyn!! I didn’t feel well for quite some time, and my PCP had said I was probably depressed because I had retired. I had explained I retired because I felt so awful I saw no other way except to retire! My “ relative” obgyn sent me for a CT scan, and the rest is history. My PCP was upset about that !! Crazy right! Some physicians “covet” their right to diagnose which is a real problem. So yes, you need to advocate for yourself, and no, doctors don’t automatically go to MAC , and many are shocked at a positive result. It takes a while for MAC to grow on a slide. Many pulmonologists are not well versed in MAC. An ID doctor is your best bet. Good luck to you. irene5