1. < MAC & Bronchiectasis

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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 27, 2022
In reply to @ecmoandrrt "Hi all. For over 35 years I've been a Registered Respiratory Therapist, ECMO Specialist and Transports...." + (show)
@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

Good morning I see that you are a newby to our group. Welcome! Not a club that anyone wants to be in, but, here we are. It sounds like you are in the same boat as me. My lungs are deteriorating also. I had what I think was an asthma attack last week. I coughed violently and continuously where all of the air went out of my lungs and then I could not get air in. Panic started to set in and I was able to get just enough air in to yell 'HELP'. It was enough to awaken my daughter to come to my aid. She immediately filled the nebulizer and put me on it. Lesson learned. 1) Keep emergency inhaler on the nightstand 2) Getting baby monitors so that my daughter can respond quicker. The reason that I was not prepared in advance is because I had never experienced coughing every bit of air out to the point of my lungs feeling collapsed. I had not ever had the traditional asthma attacks in the past. Reading through your post, I see you were taking prednisone while caring for covid patients. I can see where it would boost your energy and stamina to care for those very sick patients (God bless you for doing that), but doesn't taking prednisone lower your immunity? I would have been terrified of having the lowered immunity and getting covid at your work.

REPLY
egayle187 | @egayle187 | Aug 27, 2022
In reply to @windwalker "Hello egayle187. Would eating yogurt help with the thrush? Supposedly, the live cultures in it eat..." + (show)
@windwalker

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

Jump to this post

@windwalker ... Yogurt might help, but when the Candida filled my lungs and the ID doc said they no longer treat it, I turned to Candida Cleanse which worked well as per the next bronchoscopy results.

REPLY
ellianaroesler | @ellianaroesler | Oct 26, 2023
In reply to @_bri_ "Hello, my name is Bri. I am 25 years old and got diagnosed with Bronchiectasis about..." + (show)
@_bri_

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.

Jump to this post

We all support you and want to help

REPLY
cwal | @cwal | Oct 27, 2023
In reply to @ecmoandrrt "Hi all. For over 35 years I've been a Registered Respiratory Therapist, ECMO Specialist and Transports...." + (show)
@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

Although it's not a pleasant reason to be in this group, I do appreciate the fact that you are here and can contribute your professional experience to subjects as well. I will be watching for your posts!

REPLY
pacathy | @pacathy | Dec 23, 2023
In reply to @dixer "it is Ochroconis (Dactylaria) gallopava" + (show)
@dixer

it is Ochroconis (Dactylaria) gallopava

Jump to this post

Dixer, I just got a sputum result that showed Dactylaria identified by sequence analysis. I’ve been reviewing the literature and this old post popped up. I’m curious how your treatment worked out.
I don’t expect to hear from my doc until after holidays. I also doubt he’ll treat, but I could be wrong.

REPLY
zscline | @zscline | Dec 24, 2023

Hopefully I am responding to the right person who has just recently been diagnosed with Bronchiectasis. I think you will find this group helpful; however, I would say that some of the people who post have quite severe levels of this condition and it is sort of scary to read some of the comments. You might never get to that stage. Personally, my condition is fairly moderate, but even so, daily clearing of the lungs becomes part of a person's day with this condition. Along with your pulmonary doctor, you will have to experiment a bit to find out what helps you the most. Don't get too overwhelmed by all of this. Take it one step at a time. Good luck!

REPLY
lozza | @lozza | Dec 31, 2023

Hello,
I would be ever so grateful to find out what brand of Colloidal Silver and how much did your Mom use in the nebulizer?
Doctor's intervention is also not working for me. I am desperate to find a more natural sulution.
I'm from Down Under in Australia.

REPLY
2 replies
lenorj | @lenorj | Dec 31, 2023

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.

REPLY
2 replies
scoop | @scoop | Dec 31, 2023
In reply to @lenorj "Does anyone have a suggestion for a MAC specialist in New Jersey? I am not having..." + (show)
@lenorj

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.

Jump to this post

Not from NJ but I read recently about good care for bronchiectasis/MAC at Robert Wood Johnson (Rutgers). If you are closer to the NYC maybe Mt. Sinai?

REPLY
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Dec 31, 2023
In reply to @lozza "Hello, I would be ever so grateful to find out what brand of Colloidal Silver and..." + (show)
@lozza

Hello,
I would be ever so grateful to find out what brand of Colloidal Silver and how much did your Mom use in the nebulizer?
Doctor's intervention is also not working for me. I am desperate to find a more natural sulution.
I'm from Down Under in Australia.

Jump to this post

Hi @lozza,

When discussing supplements and complimentary medicine, it is worth also referring to NIH's National Center for Complementary and Integrative Medicine to better understand the proven evidence. This information may prove to be helpful:

– Colloidal Silver https://nccih.nih.gov/health/silver

The first section of the page states: What’s the Bottom Line?
How much do we know about colloidal silver?
There are no high quality studies on the health effects of taking colloidal silver, but we do have good evidence of its dangers.

What do we know about the effectiveness of colloidal silver?
Claims made about the health benefits of taking colloidal silver aren’t backed up by studies.

What do we know about the safety of colloidal silver?
The U.S. Food and Drug Administration (FDA) has said that colloidal silver isn’t safe or effective for treating any disease or condition.

According to Dr. Brent Bauer from Mayo Clinic says "Colloidal silver isn't considered safe or effective for any of the health claims manufacturers make. Silver has no known purpose in the body. Nor is it an essential mineral, as some sellers of silver products claim."
You can read more in this article:
– Colloidal silver: is it safe? https://www.mayoclinic.org/healthy-lifestyle/consumer-health/expert-answers/colloidal-silver/faq-20058061

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