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.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

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)

Linda - tks. i’m in Maryland

becleartoday | @becleartoday | Dec 20, 2022

Dr Anne O’Donnell at Georgetown. EXCELLENT!

tconz | @tconz | Dec 20, 2022

In reply to @becleartoday "Dr Anne O’Donnell at Georgetown. EXCELLENT!" + (show)

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

becleartoday | @becleartoday | Dec 20, 2022

Margaret Johnson, Mayo Clinic Jacksonville, FL

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)

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!

becleartoday | @becleartoday | Dec 20, 2022

Are you near San Francisco?

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)

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💕

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)

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

becleartoday | @becleartoday | Jan 1, 2023

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

sallyb827 | @sallyb827 | Jan 2, 2023

In reply to @becleartoday "Margaret Johnson, Mayo Clinic Jacksonville, FL" + (show)

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.