1. < MAC & Bronchiectasis

New member looking for advice on doctors and navigating illness

Posted by lisa3fam @lisa3fam, 3 days ago

I was very happy to find this group a few months ago. I found a lot of helpful posts and now it’s time for a question.

I was diagnosed with asthma in my 20s. I’m 54 now. Since August of 2023, I’ve had a cough with yellow mucus and shortness of breath. I was given a round of prednisone and 2 rounds of antibiotics. Cough continued and the fun began.

Asthma, allergy, sinus, GERD work ups. GERD was the prevailing diagnosis but continue cough with mucus after 2 months of 80mg omeprazole. Next, lungs…PFT shows obstruction. CT scan in Sept 2024 showed findings consistent with MAC - bilateral bronchitis, bronchial wall thickening, bronchiectasis, bronchiolitis. Negative cultures for MAC. Negative aspergillus. Still coughing with yellow mucus. I went strong on airway clearance and good aerobic exercise. Repeat CT in December showed some improvement in bronchitis and bronchiolitis and I reinflated my lung. Go me!! After following up with doc and seeing these improvements, he has now suggested I have bronchiolitis obliterans. This came from a discussion with more senior colleague. I was a little surprised after reading about it. I smoked in college for 3 years and have never worked with or around chemicals. I know lung diseases are hard to diagnose but I’m starting to question things. Doc seems hesitant to do bronchoscopy or lung biopsy, and I’m not too excited about them either. He has scheduled a repeat PFT for April to see if there’s progression. I’m at a crossroads. Should I seek another opinion or perhaps go to one of the university pulmonary clinics here in NC? I’m doing okay. I do have shortness of breath and still coughing yellow to dark yellow mucus but can manage good exercise. I’m concerned about progression now and don’t want to go another year without a diagnosis and plan. Any advice?

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

pacathy | @pacathy | 3 days ago

I was in a similar situation with persistent cough, nodules, trees-in-bud, etc. My local pulmonologist went on medical leave and wanted me to wait for bronchoscopy until he returned (10 months after first CT and 5 months from the discussion). I was already on wait list at Penn for second opinion, but lucked into a cancellation at Mayo. Great decision for me. I had a diagnosis and plan in 5 days, including education. I’m now in Penn’s bronchiectasis clinic and am pleased.
I’d encourage seeking subspecialty care from those who specialize in bronchiectasis. Good luck!

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2 replies
lisa3fam | @lisa3fam | 3 days ago
In reply to @pacathy "I was in a similar situation with persistent cough, nodules, trees-in-bud, etc. My local pulmonologist went..." + (show)
@pacathy

I was in a similar situation with persistent cough, nodules, trees-in-bud, etc. My local pulmonologist went on medical leave and wanted me to wait for bronchoscopy until he returned (10 months after first CT and 5 months from the discussion). I was already on wait list at Penn for second opinion, but lucked into a cancellation at Mayo. Great decision for me. I had a diagnosis and plan in 5 days, including education. I’m now in Penn’s bronchiectasis clinic and am pleased.
I’d encourage seeking subspecialty care from those who specialize in bronchiectasis. Good luck!

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Thank you! That is so helpful to hear. I’m happy for you that you are on a good path now.

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becleartoday | @becleartoday | 2 days ago

I suggest Dr. Leigh Ann Daniels or Dr. Kenneth Olivier. They are both at UNC and considered bronchiectasis and NTM experts.

There is also a support group in North Carolina. If you are interested in having me make an introduction, please let me know.

Take care,
Linda Esposito

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lisa3fam | @lisa3fam | 2 days ago

Thank you for the suggestions @becleartoday …very helpful. I’ll send you a PM regarding the support group.

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jannah | @jannah | 2 days ago
In reply to @pacathy "I was in a similar situation with persistent cough, nodules, trees-in-bud, etc. My local pulmonologist went..." + (show)
@pacathy

I was in a similar situation with persistent cough, nodules, trees-in-bud, etc. My local pulmonologist went on medical leave and wanted me to wait for bronchoscopy until he returned (10 months after first CT and 5 months from the discussion). I was already on wait list at Penn for second opinion, but lucked into a cancellation at Mayo. Great decision for me. I had a diagnosis and plan in 5 days, including education. I’m now in Penn’s bronchiectasis clinic and am pleased.
I’d encourage seeking subspecialty care from those who specialize in bronchiectasis. Good luck!

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I have bronchiectasis and live in the Philadelphia area. I don’t feel my present doctor is helping me know how to deal with this. It has progressed. I’ve recently had two different lung infections one on top of the other. I think i need to get a second opinion. Can you recommend a doctor at Penn?
Thank you

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1 reply
pacathy | @pacathy | 2 days ago

Penn has a multi disciplinary “Bronchiectasis, Mycobacterial Lung Disease and Chronic Lung Infection Program.” If you Google that and choose “find a doc,” you’ll see the docs, can look at their backgrounds and their patient ratings. Gregory Tino seems to be the most well known for bronchiectasis (now that I’ve been seeing videos and reading literature for a bit). I saw an online video and he seemed personable and nice. I see Dr Dorgan and he’s been a very good match for me. I wanted someone who isn’t near retirement, had fewer other programs, patient reviews indicated openness and wasn’t too new. Both Tino and Dorgan have 5star patient reviews. I’m guessing from their reviews that the other pulmonologists would also be very good. It took me months to get in. You might want to choose 2-3 and take first appointment they have.
Btw, he has me do airway clearance with albuterol and 7%saline. He started the saline this year because I had a lot of viral respiratory infections last year (young grandchildren) and he thought the 7% might decrease the frequency. Good luck! I hope you can get in soon.

REPLY
2 replies
jannah | @jannah | 2 days ago
In reply to @pacathy "Penn has a multi disciplinary “Bronchiectasis, Mycobacterial Lung Disease and Chronic Lung Infection Program.” If you..." + (show)
@pacathy

Penn has a multi disciplinary “Bronchiectasis, Mycobacterial Lung Disease and Chronic Lung Infection Program.” If you Google that and choose “find a doc,” you’ll see the docs, can look at their backgrounds and their patient ratings. Gregory Tino seems to be the most well known for bronchiectasis (now that I’ve been seeing videos and reading literature for a bit). I saw an online video and he seemed personable and nice. I see Dr Dorgan and he’s been a very good match for me. I wanted someone who isn’t near retirement, had fewer other programs, patient reviews indicated openness and wasn’t too new. Both Tino and Dorgan have 5star patient reviews. I’m guessing from their reviews that the other pulmonologists would also be very good. It took me months to get in. You might want to choose 2-3 and take first appointment they have.
Btw, he has me do airway clearance with albuterol and 7%saline. He started the saline this year because I had a lot of viral respiratory infections last year (young grandchildren) and he thought the 7% might decrease the frequency. Good luck! I hope you can get in soon.

Jump to this post

Thank you so much! All that information is so helpful!

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ecoen | @ecoen | 2 days ago

I have just completed one full week at the National Jewish Hospital in Denver and I am so so happy I am here. This hospital specializes in lungs. I feel so fortunate to have found them. I actually found out about them from this site. Mayo's is wonderful but this is all NJH does. I have bronchiectasis, aspergillus and MAC. I have been taking Cresemba for the aspergillus but have been holding off starting on the Big 3 antibiotics for the MAC. NJH is recommending airway clearance (aerobika) with albuteral and 7% saline inhalation plus a big vest that vibrates your chest to help the saline penetrate and help clear the airway. I'm very excited to try this and hope it can possibly keep me off of the antibiotics. I self referred myself. They also diagnosed GERD. I am scheduled for a bronchoscopy and endoscopy for Monday. They are also installing a device in my esophagus that will measure the amount of acid refluxed from my stomach for 4 days. I am also being sent home with sputum test kits and will be sending them samples once/month. I will be coming back here in 3 months for a follow up CT, PFT. Hopefully we will see some big improvement. Good luck to you. Find the experts.

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1 reply
blm1007blm1007 | @blm1007blm1007 | 1 day ago
In reply to @pacathy "Penn has a multi disciplinary “Bronchiectasis, Mycobacterial Lung Disease and Chronic Lung Infection Program.” If you..." + (show)
@pacathy

Penn has a multi disciplinary “Bronchiectasis, Mycobacterial Lung Disease and Chronic Lung Infection Program.” If you Google that and choose “find a doc,” you’ll see the docs, can look at their backgrounds and their patient ratings. Gregory Tino seems to be the most well known for bronchiectasis (now that I’ve been seeing videos and reading literature for a bit). I saw an online video and he seemed personable and nice. I see Dr Dorgan and he’s been a very good match for me. I wanted someone who isn’t near retirement, had fewer other programs, patient reviews indicated openness and wasn’t too new. Both Tino and Dorgan have 5star patient reviews. I’m guessing from their reviews that the other pulmonologists would also be very good. It took me months to get in. You might want to choose 2-3 and take first appointment they have.
Btw, he has me do airway clearance with albuterol and 7%saline. He started the saline this year because I had a lot of viral respiratory infections last year (young grandchildren) and he thought the 7% might decrease the frequency. Good luck! I hope you can get in soon.

Jump to this post

Hi Pacathy-
For me when looking for a doctor I need exactly that: personable and nice.
Hope, for you, and all of us...... this year has less viral respiratory infections in store us.
So far, so good, for me since having been diagnosed in 2022 nothing entering the system other than the original....MAI. I have not felt unwell in any way. I am so fortunate.
Barbara

REPLY
blm1007blm1007 | @blm1007blm1007 | 1 day ago
In reply to @ecoen "I have just completed one full week at the National Jewish Hospital in Denver and I..." + (show)
@ecoen

I have just completed one full week at the National Jewish Hospital in Denver and I am so so happy I am here. This hospital specializes in lungs. I feel so fortunate to have found them. I actually found out about them from this site. Mayo's is wonderful but this is all NJH does. I have bronchiectasis, aspergillus and MAC. I have been taking Cresemba for the aspergillus but have been holding off starting on the Big 3 antibiotics for the MAC. NJH is recommending airway clearance (aerobika) with albuteral and 7% saline inhalation plus a big vest that vibrates your chest to help the saline penetrate and help clear the airway. I'm very excited to try this and hope it can possibly keep me off of the antibiotics. I self referred myself. They also diagnosed GERD. I am scheduled for a bronchoscopy and endoscopy for Monday. They are also installing a device in my esophagus that will measure the amount of acid refluxed from my stomach for 4 days. I am also being sent home with sputum test kits and will be sending them samples once/month. I will be coming back here in 3 months for a follow up CT, PFT. Hopefully we will see some big improvement. Good luck to you. Find the experts.

Jump to this post

Yes it is great to have all the tests they can do in such a short time so that a patient will know if there are other problems that are important to test for to know if one has, possibly has, Bronchiectasis or a MAC infection.
Interesting that you mentioned four days of wearing the line and device to measure any, if any, problem related to acid reflux. They just required a 24 hour period for me when I was there. I believe that it would be better to have the line and device in for more than 24 hours.
Hope you get good results.
Enjoy Denver....The Cherry Creek Area where the Marriot Residence Inn is, is lovely and convenient.
Barbara

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