lindsey 0918 Lindsey, I'm just picking up your email and thought I would share a little bit of experience. I was horribly ill for at least 5 years before being diagnosed. Coughed constantly (I mean constantly) day and night. Was unable to go anywhere because it was just too embarrassing. I thought certainly I was dying. Lost lots of weight -- no appetite -- just ill. Had gone to 7 local doctors and specialists but to no avail. Finally out of desperation called Rochester Mayo's and they took me right in (10 hour drive from here). They diagnosed bronchiectasis within the first hour there. Told me I did not have cancer -- it is bronchiectasis and it's chronic -- not curable -- but they can manage it. Set me up with one of their pulmonologists and he started me on a program -- nebulizer first with albuterol followed by a vial of saline twice daily. I had a productive cough -- could fill a cup with horrid green phlegm several times daily. Sometimes people cannot cough up anything and the saline is supposed to help in that endeavor. I know they took me into a small room with a huge machine that was to help me cough up -- it dispersed heavy loads of saline. I told them I really didn't need the machine to get it up. Just give me a sputum cup and I could fill it. But, for those who could not get it up and out, the saline is probably your best bet. It comes in various strengths. It has been past four years now since I went to Mayo's and I continue to stay with them. If you are connected there, you have access to your pulmonologist either by phone or through the portal they set up with you. I asked up there if I were going to die from this (because I was so very ill my husband was pushing me in a wheel chair around the complex -- I couldn't walk that far). They told me I would die with it -- but hopefully not from it. The disease is manageable but you have to get with the right doctor. If you don't have a pulmonologist at Mayo's or National Jewish in Denver, I personally think you should make the trip. I've gone back to Mayo's twice just because I wanted to to be re-checked -- but it's not necessary. They can handle most of your problem through conversations and their portal. Also, they can send you the meds from their pharmacy if you'd like. I'm just here to say you can manage it. There are times when I don't feel like going and doing -- but at age 79, I assume that would be true if I had good heath. I drive wherever I want to go and do what I need to do now and can go out for dinner, etc. I honestly believe the answer is getting with the right doctor for you. Those who want to x-ray may as well forget it. Bronchiectasis doesn't show much of anything in an x-ray. Definitely have to have a cat scan for any reliable results. I know many people do cough up blood and I don't think that means you are dying -- just scary. If you can't cough up the phlegm, I would seriously look at a high strength saline. I know this is lengthy but I'm just wanting you to know many people on this forum had lots of experience and can help you more understand that there is someone out there who will be able to get you on the right path.

lindsey@0918 Hi Lindsey,,I was put on a nebulizer twice daily using Brovana followed by an inhaler, Alvesco 4 years ago by an allergy/asthma specilalist, and have levalbuterol as a rescue inhaler. It has been a lifesaver for me. I was diagnosed with bronchiectasis, asthma, as well as copd. If I get an infection, I take a low dose of antibiotics for 5 days (child's dose) and it normally clears up. Best of luck finding what is right for your situation. Baz

@lindsey0918 You are echoing what many of us have experienced with bronchiectasis. Years of unexplained illness and misdiagnosis or none at all...then we hit on the right doc. Then fear when you get the diagnosis and start reading about it. Trust what people here are saying to you - it is chronic and incurable but manageable. I would call it a "life sentence" as opposed to a "death sentence"
Who diagnosed you, and what tests have been done? What if any specific treatment are you doing?
The NTM infections that come to those of us with lung issues are difficult to diagnose and even moreso to treat successfully. If you have access to Mayo or National Jewish health, they are the best, but there are docs all over the country who can treat you effectively. Just let us know where you are and you'll get recommendations.
Also, there are ways to manage bronchiectasis to live better- probably as many different treatment plans as there are people in this group. You will need to work with your doctor to figure out what works for you.
First of all, if you are chronically feeling ill, they need to culture your sputum to see if your lungs are infected with NTM or MAC and pseudomonas or other bacteria. Bronchiectasis makes you susceptible to these. A blood test or chest xray is not enough- they need to find the infectious organism using a sputum culture that takes time to grow in a special lab, and test to see which antibiotics will kill it.
Then, if you are infected, you and they need to decide on a combination of antibiotics and/ or other treatments. Not everyone needs or can tolerate long term multi antibiotic therapy.
A number of people here are using nebulizer 7% saline solution with or instead of antibiotics. In my case, 18 months of 3 drug therapy didn't cure the MAC infection and I was quite ill from the meds, so we stopped. I will find out in April whether saline is enough to keep it from regrowing in my lungs to the point where I am getting cavities again. Other than my routine asthma meds and a mucus thinner the neb to keep me coughing is my current treatment. After 2 months my stomach and intestines are beginning to heal, I'm starting to sleep better and I have a little energy, but still no appetite. I hope I never have to do the drug routine again but someday I probably will.

I’m so sorry to hear of your struggles. I have always struggled with bringing up mucus until my pulmonologist put my on a vibrating vest to assist. This has helped, although at times I still have some challenges. From what you have shared, I would be choosing to seek another opinion as this illness is challenging and not well known, which I feel requires the most knowledgeable medical personnel one can find. There may or may not be better answers, but I hope there can be better answers for you.