Hello, just recently diagnosed with a case of Bronchiectasis

Are you guys producing sputum with a cough or is it just coming up into your throat? Is it smelly? All of my x-rays has been normal I also had two PFT and was told that it was immaculate. But I have this constant thick , sticky mucus all day and it causes bad breath. But no other symptoms. My mom supposedly had bronchiecstasis. Well this is what was on her death certificate but according to my father the doctors didn’t really know what she had when she was alive. We seem to think it was from second hand smoke because my dad was a smoker.

I’m pretty new to bronchiectasis, too. I can’t advise on insurance since I have retirement coverage for supplement, but can share my story in case it helps.
I had a couple nodules show up a couple years ago on an x-ray for back pain. The follow-up CT a year later showed ground glass, trees-in-bud, etc. Was sent to pulmonologist who thought I might have MAC (radiologist had said that) or that my post nasal drip might be causing the changes and diagnosed asthma. Started inhaler and Azelastine which helped horrid cough episodes, but little cough persisted. Could not get good sputum sample. Had repeat CT in Jan and had developed bronchiectasis (mild per Mayo).. Sent to ENT for help with PND (opaque frontal sinus) and plan for f/u CT and bronch in April. However, pulmonologist went on emergency leave and Penn Med’s first pulmonary appt was not until August. Luckily, Mayo had a cancellation in March and I got appt. Amazing place. They also thought MAC was likely and did bronch for cultures (6 weeks later-negative cultures), changed nasal sprays and asthma inhaler which finally got rid of my persistent little cough.

I wanted a local pulmonologist and with diagnosis of bronchiectasis, got into Penn’s bronchiectasis clinic in August.
This might be interesting for you: pulmonologist said X-ray changes persist despite clinical improvement and that it was possible that I’d had MAC and cleared it on my own or that it was due to my sinus issues (still a problem). Mayo had also started me on airway clearance with Albuterol nebs and Aerobika and I get nothing up. I even bought hypertonic saline to try and got nothing. He said there might not be mucus in there. I still do nebs and Aerobika daily as preventive, but stopped postural drainage since that caused reflux.
Good luck to you and keep us posted.

I’m pretty new to bronchiectasis, too. I can’t advise on insurance since I have retirement coverage for supplement, but can share my story in case it helps.
I had a couple nodules show up a couple years ago on an x-ray for back pain. The follow-up CT a year later showed ground glass, trees-in-bud, etc. Was sent to pulmonologist who thought I might have MAC (radiologist had said that) or that my post nasal drip might be causing the changes and diagnosed asthma. Started inhaler and Azelastine which helped horrid cough episodes, but little cough persisted. Could not get good sputum sample. Had repeat CT in Jan and had developed bronchiectasis (mild per Mayo).. Sent to ENT for help with PND (opaque frontal sinus) and plan for f/u CT and bronch in April. However, pulmonologist went on emergency leave and Penn Med’s first pulmonary appt was not until August. Luckily, Mayo had a cancellation in March and I got appt. Amazing place. They also thought MAC was likely and did bronch for cultures (6 weeks later-negative cultures), changed nasal sprays and asthma inhaler which finally got rid of my persistent little cough.

I wanted a local pulmonologist and with diagnosis of bronchiectasis, got into Penn’s bronchiectasis clinic in August.
This might be interesting for you: pulmonologist said X-ray changes persist despite clinical improvement and that it was possible that I’d had MAC and cleared it on my own or that it was due to my sinus issues (still a problem). Mayo had also started me on airway clearance with Albuterol nebs and Aerobika and I get nothing up. I even bought hypertonic saline to try and got nothing. He said there might not be mucus in there. I still do nebs and Aerobika daily as preventive, but stopped postural drainage since that caused reflux.
Good luck to you and keep us posted.

@pacathy It's interesting to read others' histories. Thanks for posting yours. Would you mind saying what medications you are on for asthma and sinusitis?

I find reading people’s story helpful, too. This is long, but maybe knowing about these meds will help someone.

For my sinuses, I currently use “triple spray,” from Mayo’s compounding pharmacy, 2x daily. It contains Mometazone, Ipratropium, and diphenhydramine. I also do sinus rinses twice daily with Mometazone, compounded by a local pharmacy and ordered by Penn’s frontal sinus doc. (Note: frontal sinus had actually cleared before long awaited appointment happened. Local ENT had treated it with round of antibiotics and prednisone followed by 6 weeks of Tobrax eye drops into nostrils in a head hanging position). Penn doc ordered the Mometasone because I still had a lot of PND and hoarseness.

Before Mayo ordered the triple spray, I was on the combo of Azelastine and Flonase. My cough had improved dramatically with addition of Azelastine and I was reluctant to change to Mayo’s spray-didn’t until pollen season heated up. 😀 Once I tried it, Mayo’s spray doesn't taste as bad, is cheaper and sometimes seems more effective, but I get better/worse and am not certain. Note: I had been on the Atrovent (Ipratropium) when living in another state and it seemed to help then, too. I’d think adding it to Stiolta/flonase would be similar to the triple spray.. Flonase alone, which docs seem to love, has never impressed me.

BTW, Penn recommends the NeilMed bottle for sinus rinsing and has a video on how to do it without impacting ears (say k…). Just saline rinses help at times.

For my mild asthma, I’m on Advair inhaler 2x daily.
Changing the inhaler from Stiolta to Advair took care of my persistent little cough in 48 hours-another miracle drug. 😀 I was almost cough free for first time in ages! I also use Albuterol as part of airway clearance and occ. use albuterol inhaler if I cough after exercise.

For several years I have had CT's (for another cancer's surveillance) bronch and possible NTM keeps showing up; I failed 2 sputum tests and have had no symptoms. no treatment because I was stable. In the last few months I have developed a dry cough.

My PCP (also an infectious disease doc) who was following this issue retired. I live in Philadelphia and am a Penn Patient. I know there is a special clinic, but the pulmonologists are in one area and the infectious disease docs in another area...very hard to navigate this huge healthcare system. Would like to talk with you, if possible. Are you able to share any names of MD's. I just found a new PCP at Penn and will ask her to help me with this. I have the name of a pulmonologist at Lankenau, but Penn would be more convenient.

Thanks, in advance.

I saw Dr Dorgan in the Bronchiectasis Clinic at Perelman Ctr. and really liked him. When I first tried Penn Pulmonary, I didn’t have a formal diagnosis, just abnormal X-rays and unsuccessful sputums. Because of that and self referral, I was only eligible for their second opinion program and my appt was MANY months out. I lucked out with call to Mayo. With a diagnosis, I tried again, sent records and was accepted. I chose doc from program based on reviews on their website. I imagine the process will be easier with a Penn doc to help. If you do a google search for “Penn Pulmonary Medicine,” it brings up different locations. Select Heron Lung Ctr then scroll down to their many different programs. Select and you’ll be able to see docs and reviews. Some work in a few programs.

You might be interested in Dr. Dorgsn’s comment that radiologists love to write, “consider MAC lung” when there’s ground glass, nodules, etc. because it’s a concrete suggestion.

Feel free to pm thru FB with questions. I’d also love info on your primary. I’m near Main Line Clinics, but their hospitals for specialists and tests are in convenient.