1. < MAC & Bronchiectasis

New member looking for advice on doctors and navigating illness

Posted by lisa3fam @lisa3fam, Jan 9 8:20am

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.

jnmy | @jnmy | Feb 7 7:36am

@lisa3fam I’m just a patient but I was misdiagnosed with GERD until I had the 24 hr PH test.

I had coughing, fatigue, an achy body etc, some shortness of breath while exercising etc and had been diagnosed many years before with chronic non allergic sinusitis and thick mucus.

My lung function tests and oxygen levels were normal - still are thankfully - however infection was left to fester despite asking for a sputum test. I spoke about mucus but doctor said it was nothing. My symptoms could be somatic. 🤨 I was not someone who was at the doctor’s often prior to the onset of symptoms. That continued until I took a photo of my sputum to my provider and then I got an xray. Then after asking twice for the results, I insisted on another x ray or CT scan. Of course I got another xray. Finally after meeting the pulmonologist I got the CT scan and a diagnosis.

My advice - don’t let that happen to you. I have Bronchiectasis with no MAC. I wish I had followed my gut and insisted or got another opinion early on.

There are lots of similar stories on this site. People are just fortunate to have a doctor who takes the time to diagnose. They are out there though! Hope you get a diagnosis soon.

REPLY
1 reply
lisa3fam | @lisa3fam | Feb 7 1:38pm
In reply to @jnmy "@lisa3fam I’m just a patient but I was misdiagnosed with GERD until I had the 24..." + (show)
@jnmy

@lisa3fam I’m just a patient but I was misdiagnosed with GERD until I had the 24 hr PH test.

I had coughing, fatigue, an achy body etc, some shortness of breath while exercising etc and had been diagnosed many years before with chronic non allergic sinusitis and thick mucus.

My lung function tests and oxygen levels were normal - still are thankfully - however infection was left to fester despite asking for a sputum test. I spoke about mucus but doctor said it was nothing. My symptoms could be somatic. 🤨 I was not someone who was at the doctor’s often prior to the onset of symptoms. That continued until I took a photo of my sputum to my provider and then I got an xray. Then after asking twice for the results, I insisted on another x ray or CT scan. Of course I got another xray. Finally after meeting the pulmonologist I got the CT scan and a diagnosis.

My advice - don’t let that happen to you. I have Bronchiectasis with no MAC. I wish I had followed my gut and insisted or got another opinion early on.

There are lots of similar stories on this site. People are just fortunate to have a doctor who takes the time to diagnose. They are out there though! Hope you get a diagnosis soon.

Jump to this post

Thanks for your encouragement! I’m trying to find someone locally for a second opinion.

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madelinehart | @madelinehart | Feb 7 3:05pm
In reply to @sueinmn "The two methods of diagnosing MAC, NTM, pseudomonas and other infections are a sputum culture, where..." + (show)
@sueinmn

The two methods of diagnosing MAC, NTM, pseudomonas and other infections are a sputum culture, where you cough up mucus, spit I into cups (preferably on 3 different days) or a bronchoscopy (more invasive procedure.)

In either case, the specimen is grown in a lab for 7-14 days, and if infectious agents are identified, is is grown for 4-8 more weeks to determine exactly what the infectious agent is, and what drug can treat it.

Now it I time to see a pulmonologist who specializes in treating MAC and Bronchiectasis, to determine whether you have an ongoing infection and, more important, tomset you up with a treatment plan to help keep you as healthy as possible.

Let's start with this information about Bronchiectasis, and then please ask any questions you have:
https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Diagnostic-Testing-and-Evaluation

Jump to this post

Sue,
Can you please recommend a pulmonologist and ID doctor who specializes in MAC and bronchiectisis from the Mayo Clinic in Rochester, MN?
Thank you for your help!

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2 replies
ecoen | @ecoen | Feb 7 5:34pm
In reply to @lisa3fam "I’m sorry you had the flu but glad you were able to kick it. It can..." + (show)
@lisa3fam

I’m sorry you had the flu but glad you were able to kick it. It can be difficult to mask around your loved ones. I still haven’t found a diagnosis. I’ve had a productive cough and SOB for over a year and a half now. My pulmonologist now thinks I may have bronchiolitis obliterans and/or COPD. The problem is that I have aspects of multiple categories and don’t fit neatly into one category. I’m 54, not a smoker, I eat right, don’t drink a lot. I haven’t been exposed to any longterm chemicals or other things that would affect my lungs. I don’t have MAC or Aspergilliosis. I’m otherwise a healthy person aside from having osteoporosis and these lung issues. I’m having another PFT in April to see if I still show obstruction. I was diagnosed with asthma in my 20s but he thinks I may not actually have asthma. My latest CT scan showed little to no bronchiectasis, improved bronchitis and improved atelectasis; bronchial wall thickening and micronodular peribronchial infiltrates. I didn’t know bronchiectasis could improve. My doctor didn’t tell me that when I had my first CT, and I asked if I could reverse it. From what I understand now, there can be bronchiectasis without permanent damage so improvement is possible. I’m not sure now if I even belong on this forum. I haven’t had a bronchoscopy because he doesn’t believe he’ll be able to see anything conclusive since my issues appear to be in the small airways so he doesn’t want to put me through it. I’m crossing my fingers that this will all just go away.

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I recommend getting yourself to the National Jewish Hospital in Denver where all they do is lungs. They are the experts and I'm sure they will figure out what you have and how to treat it.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Feb 7 7:39pm
In reply to @madelinehart "Sue, Can you please recommend a pulmonologist and ID doctor who specializes in MAC and bronchiectisis..." + (show)
@madelinehart

Sue,
Can you please recommend a pulmonologist and ID doctor who specializes in MAC and bronchiectisis from the Mayo Clinic in Rochester, MN?
Thank you for your help!

Jump to this post

The way Mayo Clinic works is that you contact them for your specific concern, and they bring you into the appropriate department. Here is how to contact them:
https://www.mayoclinic.org/appointments
You will be assigned based on your symptoms and the availability of staff, but the entire group there has an excellent reputation. You could request Dr Aksamit, but you might wait a very long time for an appointment.

Are you in Minnesota?

REPLY
1 reply
becleartoday | @becleartoday | Feb 8 9:16am

You are fortunate to have a major bronchiectasis center in your state. I highly recommend Dr Leigh Anne Daniels or Dr Ken Olivier. You will be an excellent hands. Enjoy the day, Linda Esposito

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1 reply
bayarea58 | @bayarea58 | Feb 8 12:16pm
In reply to @becleartoday "You are fortunate to have a major bronchiectasis center in your state. I highly recommend Dr..." + (show)
@becleartoday

You are fortunate to have a major bronchiectasis center in your state. I highly recommend Dr Leigh Anne Daniels or Dr Ken Olivier. You will be an excellent hands. Enjoy the day, Linda Esposito

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Dr. Ken Oliver spoke at the recent NYU-Langone BE/NTM patient conference, a very interesting discussion on genetics. I don’t have any personal experience with him, but he does seem like an excellent resource in your home state, as Linda points out.
https://www.med.unc.edu/medicine/pulmonary/people/kenneth-n-olivier-md-mph/

REPLY
madelinehart | @madelinehart | Feb 8 9:04pm
In reply to @sueinmn "The way Mayo Clinic works is that you contact them for your specific concern, and they..." + (show)
@sueinmn

The way Mayo Clinic works is that you contact them for your specific concern, and they bring you into the appropriate department. Here is how to contact them:
https://www.mayoclinic.org/appointments
You will be assigned based on your symptoms and the availability of staff, but the entire group there has an excellent reputation. You could request Dr Aksamit, but you might wait a very long time for an appointment.

Are you in Minnesota?

Jump to this post

I am in northern Wisconsin, only 60 miles from Duluth, MN. on Lake Superior. I am currently seeing an ID and Pulmonologist in Duluth at Essential Health for Myobacterium Avium Complex and Bronchiectisis.
I am now on the big 3 antibiotics after a wait and see period, CT scans over many years of watching.
I am hoping to work with my Duluth doctors and your suggestions for specialized doctors at Mayo who deal only with this disease.
Thank you for all the info you have shared with me.
Onward and upward!

REPLY
mmahlik | @mmahlik | Feb 9 3:15pm
In reply to @madelinehart "Sue, Can you please recommend a pulmonologist and ID doctor who specializes in MAC and bronchiectisis..." + (show)
@madelinehart

Sue,
Can you please recommend a pulmonologist and ID doctor who specializes in MAC and bronchiectisis from the Mayo Clinic in Rochester, MN?
Thank you for your help!

Jump to this post

I use Dr Kanj at mayo in Rochester and he’s wonderful. My home doctor blew this off and said it needed no follow up but Dr Kanj took it very seriously and has been extremely thorough.

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