Bronchiectasis: New Diagnosis

auntnanny, I'm still reluctant to accept this quick diagnosis, I will wait for the two pulmonary test later in the week. I don't know how this is usually diagnosed but I should have more info later. As yet I don't have a pulmonologist, this is all through my PA, who is very good and working through all the tests. I'm thinking this might be from chemo and radiation treatment. My throat always feel full like pressure and into my head. I just feel there is something else. However years ago I was also exposed to asbestos, because my husband worked in the plumbing business for our Veterans Hospital. He ground asbestos covering from pipes in a hammer mill, mixed it with water and put it back on the pipes to insulate. He came home with this asbestos dust on his clothes and I did the laundry. He has asbestosis and I keep worrying about that. But this was 45 years ago before they knew it was dangerous. I will know more after my next two tests. Thanks

@jweisser I have bronchiectasis also. I was diagnosed in 2016, (it showed on a CT scan). I don’t think any of my doctors mentioned anything about it showing up in blood work. That’s when I was also diagnosed with MAC/MAI. I don’t have any symptoms either. I believe the symptom of bronchiectasis is shortness of breath. The weight loss comes from the MAC infection along with night sweats, fatigue and I think fever. The bronchiectasis causes an ideal breeding ground for many types of lung infections because our lungs don’t clear themselves of mucus. That’s why I use the Aerobika, 50 breaths, twice a day, with huff coughing. Others use the nebulized saline. I am not an expert on ANY of this, and I’m still trying to figure it all out myself. But you will definitely get lots of info, help and good advice on this forum.

jweisser.….. My bronchiectasis was diagnosed from a cat scan of lungs and confirmed with sputum test. The sputum test tells which bacteria is there at the time and therefore, they know which antibiotic to prescribe. When the bacteria is killed, you still have bronchiectasis because that is the condition of your lungs but you will not be ill when the infection is gone. (My experience). I continue to have flares -- often at first but as time as gone on the flares are now months apart instead of weeks. If you can get to a Mayo's anywhere, it will be your best bet. We drove 10 hours to get there and worth every mile of the trip. The pulmonologist there to whom I was assigned is Dr. Moua (Rochester)…… he continues to keep track of me. I can write him a note any time or call him. I just write because he is very busy. He answers right away. I send him results of sputum tests done at a local lab and he prescribes from that. I've never had to go back to see him. I have medicare and blue cross/blue shield and I've never paid a penny for anything. There are no charges for his continuous care. It's a great place. I can't say enough good. I was very ill when I went -- very hard coughing night and day with no let-up. I'm so grateful.

navylady ------ get to Mayo's in Florida. They will be able to diagnose you quickly and you will be given the proper antibiotics to rid the infection. Certainly Advair is not the answer. Don't wait..... call them. You will feel better soon.

2jweisser It took several years...maybe 5 before the weight loss kicked in. I've gone from 126 to 102 pounds and find it very hard to gain.

@jweisser Most of, if not all, people in this discussion group have bronchiectasis. Some have more serious symptoms than others. I understand how scary it can be when you don't know anything about it. Here are links to some websites that provide information on bronchiectasis. In the mean time, you'll find a lot of helpful ideas, advice, tips, etc. on this site to help you manage this disease.
https://www.thoracic.org/patients/patient-resources/resources/bronchiectasis-pt1.pdf
http://www.lung.org/lung-health-and-diseases/lung-disease-lookup/bronchiectasis/symptoms-causes-risk-factors.html
https://www.nhlbi.nih.gov/health-topics/bronchiectasis
Come to this site often and feel free to ask questions. You'll get a lot of help and emotional support from it. Good luck.

@jweisser You might find this website helpful. https://www.bronchiectasisandntminitiative.org/Bronchiectasis/Bronchiectasis-Resources/Basics-Of-Bronchiectasis?utm_source=BronchandNTM+E-Blast10.2018&utm_campaign=+e-Newsletter&utm_medium=email

@jweisser, Welcome to this forum. You'll find information and support here that is not available anywhere else in such a convenient package. I was diagnosed with bronchiectasis in 1997 -- had never heard of it. It's taken many years and lots of independent research and lots of personal experience for me to feel that I know what it is, what it means in my life and in my future, and how to best protect myself. People around me have no conception of the condition, and I've had to work with a couple of pulmonologists who understood it less than I do! Fortunately, I'm with a knowledgeable, proactive pulmonologist now, but you can't assume that "the doctor knows." Arm yourself with information. Plenty of it can be found right here. You will be empowered by it.

@ginak ...Thanks for posting on bronchiectasis....Very informative. I just found that I have bronchiectasis along with my MAC after having an updated catscan done in prep for a Mayo Clinic second opinion appointment. (My insurance does not typically cover Mayo and therefore I am unable to have testing done at the hospital.) I am beyond thrilled to go to Mayo and get their expertise as I have been left in the dark by my diagnosing pulmonologist....maybe I should just call him my X pulmonologist. 🙂 Thanks again. Kate

@onana, I received a message on My Chart from my PA, she said...………….. RE: Visit Follow-Up Question
Message body:
Your symptoms are very consistent with bronchiectasis. I have referred you to pulmonology. He wants you to proceed with a PFT. that will be useful for the pulmonologist.

So I guess we move on, I'm still trying to think this is only a chest cold that won't let go. My PFT is Monday, after that she will have an appointment with a Pulmonoligist in Rapid City. Thanks to everyone who offered information and support.