I was recently diagnosed with Bronchiectasis.

Posted by mmteach @mmteach, May 10, 2016

I was recently diagnosed with Bronchiectasis. No symptoms yet just starting different tests- another CAT scan, pulminary function test, and possible bronchoscopy. Any advice/suggestions would be greaty appreciated. Thank you!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

I was just told today after having thought I had severe asthma. Starting a saline solution in the neublizer, antibiotic, and refer to pulomanary rehab??? The journey begins

REPLY
@rickden

I was just told today after having thought I had severe asthma. Starting a saline solution in the neublizer, antibiotic, and refer to pulomanary rehab??? The journey begins

Jump to this post

Welcome to our group. This sounds a lot like me 4 years ago - if this is new to you, you are probably feeling overwhelmed or a bit anxious.
Mayo Connect is a great place to get answers, or just to chat with people in your situation. Can you tell us about the beginning of your journey, like what led to the diagnosis? Have you been diagnosed with a specific infection? What diagnostic tool was used to determine you have bronchiectasis (CT, x-ray, bronchoscopy)?

Please feel free to ask questions, I have been where you are!
Sue

REPLY
@sueinmn

Welcome to our group. This sounds a lot like me 4 years ago - if this is new to you, you are probably feeling overwhelmed or a bit anxious.
Mayo Connect is a great place to get answers, or just to chat with people in your situation. Can you tell us about the beginning of your journey, like what led to the diagnosis? Have you been diagnosed with a specific infection? What diagnostic tool was used to determine you have bronchiectasis (CT, x-ray, bronchoscopy)?

Please feel free to ask questions, I have been where you are!
Sue

Jump to this post

Yes Ct and bronscopy, blood test. Started in 2010 said it was severe asthma, then progressed to today. Several bouts of pneumonia . Constant coughing and thick mucus. Glad I found this site

REPLY
@rickden

Yes Ct and bronscopy, blood test. Started in 2010 said it was severe asthma, then progressed to today. Several bouts of pneumonia . Constant coughing and thick mucus. Glad I found this site

Jump to this post

Oh, you do sound like me! What infection has been diagnosed?
Sue

REPLY
In reply to @rickden "Aspergillus" + (show)
@rickden

Aspergillus

Jump to this post

Do you know if they sent cultures for MAC? Those take weeks to come back, but it is often the cause of long term symptoms.
Sue

REPLY
@sueinmn

Do you know if they sent cultures for MAC? Those take weeks to come back, but it is often the cause of long term symptoms.
Sue

Jump to this post

Not sure, what is MAC?

REPLY

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.

REPLY
@ecmoandrrt

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.

Jump to this post

More questions answered:
We use Saline(salt water equal to blood chemistry in body) to carry your Bronchodilator to your lungs.
Oscillating PEP? I use a Acapella with my bronchodilator treatments. It is a wonderful invention especially for CF patients. Gets the mucous up! Significant improvements in forced expiratory volume in one second, forced vital capacity and peak expiratory flow daily if needed.
Also have my handy incentive spirometer and yes it works to exercise those lungs.
I use a spacer for my MDIs. Because you really do get more drug in with a spacer.
I absolutely sterilise my Nebs with vinegar when cleaning.

REPLY
@egayle187

@raney... I've had thrush frequently and use a tongue scraper several times a day. I've found that taking Candida Cleanse regularly has eliminated all the opportunistic infections (as shown in bronchoscopy results). It would not hurt to try these techniques if antibiotics and chemicals are not working. There are also new nasal rinse machines that may reach your problem areas better than squirt bottles. Good luck.

Jump to this post

Hello egayle187. Would eating yogurt help with the thrush? Supposedly, the live cultures in it eat the yeast.

REPLY
Please sign in or register to post a reply.