I was recently diagnosed with Bronchiectasis.

Hello, my name is Bri. I am 25 years old and got diagnosed with Bronchiectasis about 1.5 years ago. I present with many symptoms and have a constant cough. I am lucky that I was able to be seen at Mayo so quickly after my diagnosis as it is very severe for an unknown reason. I did not have any illness or infection that is thought to have caused it. I am in the middle of being tested for everything under the sun... hopefully answers will come soon! Just wanted to introduce myself in hopes that this support will help ease some of the angst.

Hi all. For over 35 years I've been a Registered Respiratory Therapist, ECMO Specialist and Transports. The worst of the worst patients. My speciality was NICU/PICU/CCU/Adult ICU. Took care of Covid patients the last two years and I just retired(age 66). They already want me back PRN. Lol.
I've had Asthma my whole life. Never smoked and neither did my parents. I've been intubated. Back as a teen when all we had were Bird Mark Sevens(ventilator). Believe me being intubated is horrible. I died and was resuscitated(coded) from Asthma and couldn't breathe. Spent a lot of times in ER over my life.
So of course what better career then what I really know.
40 years ago my Pulmonologist told me my future was Bronchiectasis. Of course now I have it.
Maybe in some small way I can answer with my experience? Questions.
1. I take Albuterol MDIs and also have Nebulizers handy with a compressor. Also have DuoNebs. Have the daily prophylactic like BREO and Serevent, Spiriva etc. I have high BP and am on Fosinopril. Now my opinion and experience is I won't take Xopenex. Xopenex is expensive and does not lower your BP (not mine anyway). Read the studies and a PDR. But that is me and not you. Long before we had Albuterol what we had was only Adrenalin(Epinephrine). Yikes. My Mother would break an Asthma attack by taking me in a hot shower. I drink a lot of coffee(caffeine) and tea( natural Theophylline). NEVER go anywhere without my MDI.
2. What has saved my life is steroids. Period. I have a ton of prednisone on hand. In 2020 taking care of Covid and no vaccines yet? I took a LOT of prophylactic prednisone. A 100mg to start? Yes. 20-40mg a day maintenance PRN? Yes.
3. I have always educated that if your having an Asthma attack take as many hits on your MDI as you need or Neb. It's your life! And If it doesn't break? GET TO ER!!!! I have taken 10 hits on my MDI to try to break my attack. Lost a dear friend to Asthma attack who was a RRT. He was stubborn and waited to long. He died in the parking lot in front of ER.
4. Have had Bacterial Bronchitis my whole life also. Yes Bacterial. If no antibiotics existed would have died a long time ago. First 24 hrs for me is critical. I know when I'm having first stages of Bronchitis. Coughing green chunks up etc. My antibiotic of choice now is Levaquin immediately with steroids and I have all the drugs at my house. (My physician is awesome) Gone through them all, antibiotics. Yes I have coughed so hard broken ribs, peed myself, coughed up blood and all those other wonderful things. Years ago I'd go to ER and say give me Solu Medrol and Rocephin please. Lol. My pediatric Dr back when I was a kid could never understand why I got Bacterial Bronchitis. And my Pulmonologists never understood it either.
5. My Asthma is environmental. Weather change. Perfume can set me off. Pollution or chemical plants. Strong cleaners etc.
6. Ok best thing to do with any lung disease and Bronchiectasis is: DON'T SMOKE!!! Lose weight and that is paramount. Depression? I'm on Wellbutrin and there is no shame to use antidepressants. I use marijuana gummies to help sleep. I use meditation. I swim. I eat healthy(or try) and hidrate. This sucks.

Why am I here? I started coughing bad last November and couldn't stop it and still can't. Lots of Mucous. And I just knew what it was. Damn it. I've certainly taken care of a lot of Bronchiectasis patients. Community is a good thing because nobody really knows what we're going through unless they have. My health has deteriorated since last November. I want to read what others have gone through. So I'm here at the Mayo forums.

it is Ochroconis (Dactylaria) gallopava

Does anyone have a suggestion for a MAC specialist in New Jersey? I am not having much success in finding a pulmonologist that understands this condition.

Does anyone have a suggestion for a MAC specialist in New Jersey? I am not having much success in finding a pulmonologist that understands this condition.