1. < MAC & Bronchiectasis

Bronchiectasis: New Diagnosis

Posted by navylady @navylady, Jul 26, 2018

New to your group. Non-smoker. Pneumonia x6 in 12 years, double pneumonia twice. Was diagnosed with chronic bronchitis and COPD for past 15 years, now pulmonologist based on x-rays and MRI has diagnosed no COPD, yes bronchiectasis. Take advair 250/50 twice a day. Past ten days I am increasingly gurgling, wheezing, some chest pain. I have recently moved to Florida which I like but am having long wait times to get into see a family care NP who can hopefully refer me to a pulmonologist. I walk 20-30 minutes a day. Any ideas how to manage this now. Am worried about getting pneumonia again. I went to one walk-in clinic at a reputable hospital. They literally did nothing except take x-rays. Didn't even talk to me. Just billed $2000+ for x-rays. Do I try another walk-in clinic. I feel very alone right now with this chronic medical problem.

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mch (Marycarol) | @mch | Dec 20, 2022
In reply to @becleartoday "Hi Mary Carol, Lots of good questions! Believe it or not, diagnosing bronchiectasis is not so..." + (show)
@becleartoday

Hi Mary Carol,

Lots of good questions!

Believe it or not, diagnosing bronchiectasis is not so black-and-white. There are a lot of criteria. That’s why whenever possible it’s best to go to a bronchiectasis center such as the Mayo Clinic, UT Tyler, National Jewish or NYU Langone.

Currently there are 19 centers that participate with the Bronchiectasis Research Registry. If you want to share where you live I can let you know which center is closest to you.

Best,
Linda Esposito

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Linda - tks. i’m in Maryland

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becleartoday | @becleartoday | Dec 20, 2022

Dr Anne O’Donnell at Georgetown. EXCELLENT!

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1 reply
tconz | @tconz | Dec 20, 2022
In reply to @becleartoday "Dr Anne O’Donnell at Georgetown. EXCELLENT!" + (show)
@becleartoday

Dr Anne O’Donnell at Georgetown. EXCELLENT!

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I am in Panama City, Florida and where would you suggest I go?

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becleartoday | @becleartoday | Dec 20, 2022

Margaret Johnson, Mayo Clinic Jacksonville, FL

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1 reply
diane47 | @diane47 | Dec 20, 2022
In reply to @becleartoday "Hi Mary Carol, Lots of good questions! Believe it or not, diagnosing bronchiectasis is not so..." + (show)
@becleartoday

Hi Mary Carol,

Lots of good questions!

Believe it or not, diagnosing bronchiectasis is not so black-and-white. There are a lot of criteria. That’s why whenever possible it’s best to go to a bronchiectasis center such as the Mayo Clinic, UT Tyler, National Jewish or NYU Langone.

Currently there are 19 centers that participate with the Bronchiectasis Research Registry. If you want to share where you live I can let you know which center is closest to you.

Best,
Linda Esposito

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Hello,
This is a very helpful discussion. I was diagnosed with MAC in September and I have found my pulmonologist to be very helpful. I live in Northern California and plan to stay with my current doctors, but for future reference could you send me the center that would be closest to me? Thank you!

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becleartoday | @becleartoday | Dec 20, 2022

Are you near San Francisco?

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migizii | @migizii | Dec 20, 2022
In reply to @mch "Sue - adding to my last….other than recent diagnosis of mild asthma based of breathing test..." + (show)
@mch

Sue - adding to my last….other than recent diagnosis of mild asthma based of breathing test ordered by pulmonologist prior to first appt, 8’ve never had any lung issues/illnesses other than the rare headcold (and those mostly sinus and not chest symptoms). And the asthma surprised me as I’ve never had any symptoms even though I’ve been physically active all my life.

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In reply to @mch… our diagnosing situation is quite similar, although I remained fairly sick during the ongoing process of CT scans and bronchoscopes. No bronchiectasis diagnosis was ever made until I went to Mayo Clinic. As it turned out, the facility I was seen at for two years, could not discern the diagnosis and only gave me an exercise induced asthma diagnosis. I, too, had never had a history of respiratory illnesses over my life. Thank goodness I finally arrived at a facility that had knowledge of this disease and I started to receive treatment💕

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sarahtoo | @sarahtoo | Jan 1, 2023
In reply to @becleartoday "Hi Mary Carol, Lots of good questions! Believe it or not, diagnosing bronchiectasis is not so..." + (show)
@becleartoday

Hi Mary Carol,

Lots of good questions!

Believe it or not, diagnosing bronchiectasis is not so black-and-white. There are a lot of criteria. That’s why whenever possible it’s best to go to a bronchiectasis center such as the Mayo Clinic, UT Tyler, National Jewish or NYU Langone.

Currently there are 19 centers that participate with the Bronchiectasis Research Registry. If you want to share where you live I can let you know which center is closest to you.

Best,
Linda Esposito

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Hi Linda, Can you tell me which center is closest to Southern California?
Thank you!

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becleartoday | @becleartoday | Jan 1, 2023

Hi Sarah, I’ve heard excellent feedback on Dr ElMaraachli in Jolla!

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sallyb827 | @sallyb827 | Jan 2, 2023
In reply to @becleartoday "Margaret Johnson, Mayo Clinic Jacksonville, FL" + (show)
@becleartoday

Margaret Johnson, Mayo Clinic Jacksonville, FL

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I live in Jacksonville and tried to get an appointment with her but it would have taken 4 to 5 months. I am seeing Dr. Hollie Saunders. She is a fellow and I am very happy with her. If she leaves Mayo, I will transfer to Margaret Johnson.
Thank you for the confirmation of Dr. Johnson.

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