That is interesting advice. I'm not sure that I have ever been checked for allergies to medications. I just assume that I am not allergic. I can imagine that not all allergies to medications reveal themselves in the same way.  Thanks for sharing! :)

Considering the age of your diagnosis, I can imagine that your support system would have been your family and that discussing a diagnosis wouldn't have been of interest.  As an adult, I see how having a network or community of others with similar diagnoses would be helpful in navigating and coping with any health condition. Totally makes sense to me! :)
PS. I am so thankful that you are serving as a patient advisor... being in that role can have a wonderful impact on pharmaceutical development!

For some reason cant Like this. 

Yes - the way the comment was added it looks like it's blocked from recognizing the I Care clicks.

I can't believe that PA said that!!! How awful! Good move in never returning to that person for your care. 
Trusting that your healthcare providers have your best interests in mind is so important. You were right to move on. 

That’s horrible. I love my pulmo but all he suggests is antibiotics. I do have an aerobika and a vest. Sometimes, the vest makes my ribs hurt really badly.
I am feeling so discouraged about this disease. I don’t tolerate the antibiotics well.

Laura, thank you so much for sharing.  Sounds like you have a great team of physicians working with you to support your decisions and assisting to formulate a treatment plan that will help with your diagnosis.  You are right, it can a be overwhelming with all the information out there on the web. Thanks for helping to inform our community about potential opportunities to get involved in research studies! :)

I’m considering going to the National Jewish Health in Denver. Why were you there for 11 days? Were you there as an outpatient? Where are you in the progression of the disease? I think I’ve waited a little too long to address my disease and fear my options might be limited to antibiotics. 

Hi Key,
I know that you were asking someone else about their stay at National Jewish. I thought I would share my own experience. I was there for a week as an outpatient. I reported to my "room" every day, and the staff had a list of tests and classes ready for me for the day.  At the end of the week, the entire medical team met with me to give me their diagnosis and proposal for treatment. In my case, I continued on strong antibiotics for several months and was referred to University of Colorado Hospital to have the upper right lobe of my lungs removed. I then returned to NJH after being discharged from the hospital so the staff could be sure I was fit to travel.
I know from experience that every patient receives a custom plan based on their unique situation. Believe me that NJH is the number one center for NTM and bronchiectasis in the country. They will take great care of you. But bring a book to read, there may be some times you are waiting for your next test!

Nola,
Hello! Welcome to the site. Have you had a sputum culture and sensitivity test recently? Is your doctor experienced with Ntm/ bronchiectasis patients?

hi during the past 2 yrs i was very sick with bronchitis to and was on steroids a lot and a nebulizer and my lung doctor told  i had to go on xolair for asma and would help. one yr later it is helping i am not getting bronchittis much maybe one time in a yr. now i find out i have bronchiectasis. doctor just cleaned lungs out and ordered me a lung vest don't know what the name is. was told to use nebulizer and vest when i get it. wants to try this first. can you tell about the lung vest.

I have the Hil Rom vest but there are much nicer portable ones now.  Afflo vest is another.  I do my meds then put on the vest looks like a life jacket,  setting at 14 and for 20 min I wear it jiggles you to help loosen the mucus.  Most times you can cough it up.  Does help.  Most insurances will cover if the dr scrip says you have bronchiectasis or Cf.  I wish I had one of the portables so you can move around do things I am stuck one spot.  

Toby I been on xolair since 2003 for allergic asthma 3 injections every two weeks is 375 mg .  Been so long not sure helping and the allergist added Faserna for the high eosinophllis.  Now every 8 weeks after the first 2 months.   FASENRA is designed to target cells in your body called eosinophils (e-o-SIN-o-phils), which can be a key cause of severe asthma.  He doesn't want me to stop any of it.  

Tobi What did  you mean by the doctor cleared my lungs out. 

Wonder if he means bronchcoscopy.  My pulmo saw fluid bottom my lungs on a ct so did that they get lung sample do a wash and then suck the fluid out.  

Hi @Nola. It is pretty common to have some sort of inhaled medication prescribed for those with bronchiectasis. As many have responded, they typically use the inhaled medication along with their airway clearance routine. As Katie mentioned, if your doctor has done a sputum test and identified that you have a specific bacteria in your sputum, they may prescribe you an antibiotic to take. Sometimes, they may prescribe you an antibiotic to take to help prevent flare-ups.  As for the steroids, they are used to help boost your immune system when you have a sudden infection like pneumonia and bronchitis. Also, steroids are often prescribed to those that have another underlying condition like asthma or COPD.  
That's just a little background for what those medicines do. However, if you feel like you need a second opinion, it's always okay to get it. 

I don’t take any inhaled or oral steroids, as I was told can increase the risk of pneumonia.
My daily inhaler is stiolto.