I have bronchiectasis and did have a cough, but my meds to treat my post nasal drip and mild asthma have the cough under control now. I have rarely been able to produce a sputum sample and Mayo had to do a brinchoscopy to get one. (Note: I just did a driving trip and my allergies flared out of control and I did cough for a few days. I’m improving now.)
I’m not sure if you’re looking for help with cough or if you’re surprised you aren’t getting up mucus. If it’s the latter, here’s a study from Europe that shows “dry bronchiectasis” isn’t that uncommon and indicates the disease is milder. (Also note-I just skimmed it.) https://erj.ersjournals.com/content/47/4/1113
Thank you! I was not diagnosed for three years because my pulmonologist always asked if I coughed up anything and I said no. It got worse and worse and I finally ended up in ER. I was diagnosed there with a CT scan. The doctor had only ever ordered chest x rays.
I am thinking of talking to an attorney about malpractice because now it is really bad and may not have been if caught earlier. What do you think? I had to leave my job because of gag coughing so much.
Thank you! I was not diagnosed for three years because my pulmonologist always asked if I coughed up anything and I said no. It got worse and worse and I finally ended up in ER. I was diagnosed there with a CT scan. The doctor had only ever ordered chest x rays.
I am thinking of talking to an attorney about malpractice because now it is really bad and may not have been if caught earlier. What do you think? I had to leave my job because of gag coughing so much.
Welcome to Mayo Connect, and especially to our widely varied group of people living with bronchiectasis.
Even though we have over 1200 members, bronchiectasis is a rare condition, and is very often mis-diagnosed. It affects perhaps 1/2 million people in the US (Compare to asthma 27 mil, COPD 16 mil & emphysema 14 mil.) so even many pulmonologists only see a few cases in their careers. For my primary, I was only her second case in over 25 years, and she had to call the pulmonology department of our large clinical system to find out which doctor I should see (there were only 2 of more than 20 with experience.)
If you do some reading here, you will find that 3 years to diagnosis is not uncommon at all - I was treated for asthma, bronchitis, pneumonia, cough, fatigue...for more than 3 years before a very sharp-eyed radiologist recognized signs of both bronchiectasis and MAC on a chest x-ray.
You might want to start here- https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/
Did the pulmonologist or the hospital respiratory therapist started you on airway clearance to help manage your condition? This can help manage your cough so you may be able to return to work.
Were you also diagnosed with a lung infection?
Thank you! I was not diagnosed for three years because my pulmonologist always asked if I coughed up anything and I said no. It got worse and worse and I finally ended up in ER. I was diagnosed there with a CT scan. The doctor had only ever ordered chest x rays.
I am thinking of talking to an attorney about malpractice because now it is really bad and may not have been if caught earlier. What do you think? I had to leave my job because of gag coughing so much.
Are you being treated for MAC? I was coughing nonstop for months until I started treatment. I still cough which is considered bronchiectasis cough but I call it normal. When I have a flare up it’s more intense and frequent.
Has your cough improved? Are you comfortable with your current care?
I can’t advise on the lawsuit. I worked as an RN for >30 years and know hindsight is 20-20.
FWIW, my first CT was ordered by an Urgent Care and I had a couple nodules. By the f/u CT a year later, I had trees-in-buds, mucoid impactions, etc, but no bronchiectasis. The pulmonologist ordered Azelastine and Stiolta. It helped so much (!), but I had still developed bronchiectasis by the next CT, 4.5 months later. The pulmonologist hadn’t discussed any airway clearance nor done an ENT or allergy referral. Now I know those would’ve helped, but at the time, I was very grateful that he’d helped with my horrid coughing fits. I did change my primary doc, went to Mayo and was finally able to get into Penn’s bronchiectasis clinic and my symptoms are usually much improved.
I wasn’t aggressive enough in pursuing help. Mine got out of control in 2021. I knew they were dealing with patients sicker than me (still Covid waves) and docs here were just slammed. I complained, but not often enough.
I wish you the best and hope you’re better.
I had stable mild bronchiectasis with no cough for years, just watched by regular pulmonologist. When I started having dry cough it my PCP pushed to evaluate (good on him!). Went thru trials of meds/ inhalers & gerd meds to no effect & ended up in bronchiectasis program at NYU Langone in NYC where I've now had chest therapy & have cultured positive for MAC. Am now having productive cough but only when I do airway clearance & occasionally at night. So I don't know if the change from dry to productive cough is from learning airway clearance or MAC progressing or both. Altho, the sputum is getting thicker with more tiny white bits vs just clear. I understand it's common to have dry cough w bronchiectasis at least at first. But my specialist team + chest therapist stressed even w mild symptoms, getting on the regular airway clearance to at least stay stable & they said sometimes there can be some reversal of the bronchiectasis (some people here have experienced that). Decisions about treating the MAC will be in coming weeks.
Thank you! I was not diagnosed for three years because my pulmonologist always asked if I coughed up anything and I said no. It got worse and worse and I finally ended up in ER. I was diagnosed there with a CT scan. The doctor had only ever ordered chest x rays.
I am thinking of talking to an attorney about malpractice because now it is really bad and may not have been if caught earlier. What do you think? I had to leave my job because of gag coughing so much.
Its not uncommon if you are stable, MAC isnt treated. I was dx 5 years ago and was stable. Then i got pneumonia, was on antibiotics for 10 days and had a CXR which looked good. I kept taking my temp which was low grade 99 but a concern. My pulmonologist wanted to do another CXR but i wanted chest ct which showed another area of congestion. I was admitted for 5 days of IV Zosyn. An infectious disease reviewed my xrays and told me i need MAC tx not antibiotics!
Why didnt radiology pick that up? I toold my doctor i only want chest CT which are more sensitive. I started on MAC tx a month ago
I coughed for a year and a half before going to the Dr . Was diagnosed with Bronchiectasis and MAC through CT scan and bronchoscopy. I produce no sputum, no mucus. My pulmonologist never mentioned airway clearance. I guess nothing to clear, since no mucus. My ID Dr did suggest trying a flutter valve
Are you being treated for MAC? I was coughing nonstop for months until I started treatment. I still cough which is considered bronchiectasis cough but I call it normal. When I have a flare up it’s more intense and frequent.
Its not uncommon if you are stable, MAC isnt treated. I was dx 5 years ago and was stable. Then i got pneumonia, was on antibiotics for 10 days and had a CXR which looked good. I kept taking my temp which was low grade 99 but a concern. My pulmonologist wanted to do another CXR but i wanted chest ct which showed another area of congestion. I was admitted for 5 days of IV Zosyn. An infectious disease reviewed my xrays and told me i need MAC tx not antibiotics!
Why didnt radiology pick that up? I toold my doctor i only want chest CT which are more sensitive. I started on MAC tx a month ago
Connect
Connect
Like
Helpful
Hug
I have bronchiectasis and did have a cough, but my meds to treat my post nasal drip and mild asthma have the cough under control now. I have rarely been able to produce a sputum sample and Mayo had to do a brinchoscopy to get one. (Note: I just did a driving trip and my allergies flared out of control and I did cough for a few days. I’m improving now.)
I’m not sure if you’re looking for help with cough or if you’re surprised you aren’t getting up mucus. If it’s the latter, here’s a study from Europe that shows “dry bronchiectasis” isn’t that uncommon and indicates the disease is milder. (Also note-I just skimmed it.)
https://erj.ersjournals.com/content/47/4/1113
-
Like -
Helpful -
Hug
1 ReactionThank you! I was not diagnosed for three years because my pulmonologist always asked if I coughed up anything and I said no. It got worse and worse and I finally ended up in ER. I was diagnosed there with a CT scan. The doctor had only ever ordered chest x rays.
I am thinking of talking to an attorney about malpractice because now it is really bad and may not have been if caught earlier. What do you think? I had to leave my job because of gag coughing so much.
Welcome to Mayo Connect, and especially to our widely varied group of people living with bronchiectasis.
Even though we have over 1200 members, bronchiectasis is a rare condition, and is very often mis-diagnosed. It affects perhaps 1/2 million people in the US (Compare to asthma 27 mil, COPD 16 mil & emphysema 14 mil.) so even many pulmonologists only see a few cases in their careers. For my primary, I was only her second case in over 25 years, and she had to call the pulmonology department of our large clinical system to find out which doctor I should see (there were only 2 of more than 20 with experience.)
If you do some reading here, you will find that 3 years to diagnosis is not uncommon at all - I was treated for asthma, bronchitis, pneumonia, cough, fatigue...for more than 3 years before a very sharp-eyed radiologist recognized signs of both bronchiectasis and MAC on a chest x-ray.
You might want to start here-
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/
Did the pulmonologist or the hospital respiratory therapist started you on airway clearance to help manage your condition? This can help manage your cough so you may be able to return to work.
Were you also diagnosed with a lung infection?
Are you being treated for MAC? I was coughing nonstop for months until I started treatment. I still cough which is considered bronchiectasis cough but I call it normal. When I have a flare up it’s more intense and frequent.
Has your cough improved? Are you comfortable with your current care?
I can’t advise on the lawsuit. I worked as an RN for >30 years and know hindsight is 20-20.
FWIW, my first CT was ordered by an Urgent Care and I had a couple nodules. By the f/u CT a year later, I had trees-in-buds, mucoid impactions, etc, but no bronchiectasis. The pulmonologist ordered Azelastine and Stiolta. It helped so much (!), but I had still developed bronchiectasis by the next CT, 4.5 months later. The pulmonologist hadn’t discussed any airway clearance nor done an ENT or allergy referral. Now I know those would’ve helped, but at the time, I was very grateful that he’d helped with my horrid coughing fits. I did change my primary doc, went to Mayo and was finally able to get into Penn’s bronchiectasis clinic and my symptoms are usually much improved.
I wasn’t aggressive enough in pursuing help. Mine got out of control in 2021. I knew they were dealing with patients sicker than me (still Covid waves) and docs here were just slammed. I complained, but not often enough.
I wish you the best and hope you’re better.
I had stable mild bronchiectasis with no cough for years, just watched by regular pulmonologist. When I started having dry cough it my PCP pushed to evaluate (good on him!). Went thru trials of meds/ inhalers & gerd meds to no effect & ended up in bronchiectasis program at NYU Langone in NYC where I've now had chest therapy & have cultured positive for MAC. Am now having productive cough but only when I do airway clearance & occasionally at night. So I don't know if the change from dry to productive cough is from learning airway clearance or MAC progressing or both. Altho, the sputum is getting thicker with more tiny white bits vs just clear. I understand it's common to have dry cough w bronchiectasis at least at first. But my specialist team + chest therapist stressed even w mild symptoms, getting on the regular airway clearance to at least stay stable & they said sometimes there can be some reversal of the bronchiectasis (some people here have experienced that). Decisions about treating the MAC will be in coming weeks.
Its not uncommon if you are stable, MAC isnt treated. I was dx 5 years ago and was stable. Then i got pneumonia, was on antibiotics for 10 days and had a CXR which looked good. I kept taking my temp which was low grade 99 but a concern. My pulmonologist wanted to do another CXR but i wanted chest ct which showed another area of congestion. I was admitted for 5 days of IV Zosyn. An infectious disease reviewed my xrays and told me i need MAC tx not antibiotics!
Why didnt radiology pick that up? I toold my doctor i only want chest CT which are more sensitive. I started on MAC tx a month ago
I coughed for a year and a half before going to the Dr . Was diagnosed with Bronchiectasis and MAC through CT scan and bronchoscopy. I produce no sputum, no mucus. My pulmonologist never mentioned airway clearance. I guess nothing to clear, since no mucus. My ID Dr did suggest trying a flutter valve
What exactly is MAC in simple terms? I never heard of it.
Thank you!
What is MAC in simple terms?