1. < MAC & Bronchiectasis

Could use some help with my concerns and questions

Posted by gtokaren @gtokaren, Oct 27, 2023

I originally posted this in the incorrect topic,. So I’m trying again…
I was diagnosed with Bronchiectasis (and asthma and middle right lobe syndrome via CT scan) a couple of months ago. I also had the sputum AFB tests and culture. The culture came back with Gordonare Bacterium, which they don’t treat, and earlier stain test was positive with Influenza-H, which I was on doxycycline for 10 days and it helped (July). I recently had an exacerbation of the condition which is now in its 4th week. I have coughing spells throughout the day and very productive I might add. I have fevers with frequency ranging from 99 – 100 degrees and don’t feel myself. My Pulmonologist wants me to just use the Brelio inhaler on a daily basis, and the nebulizer, which doesn’t seem to help me. The liquid does not diminish in the container after 20 minutes of use. I’m seeing my primary care doc on Monday. Can anyone advise what question I should ask? I also want to ask if the liquid left in the nebulizer after 20 minutes is normal – it stays at max. My family wants me to go to the Mayo Clinic for this, but do I need to be worse off for this? Thanks for any help you can provide.

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ecmoandrrt | @ecmoandrrt | Oct 27, 2023

Howdy. Just retired and age 67. Asthmatic since birth and now have Bronchiectasis. I'm also a Registered Respiratory Therapist, ECMO Specialist Perfusion, Transports, NICU/PICU level IV and CCU and Adult ICU and ER Specialist.
35 years.
Ahh Gordonia. Rare. Do you happen to be immunocompromised? Doxy is a good antibiotic for Flu H.
Ok my experience with just getting(two years ago) Bronchiectasis(my Pulmonologist told me 40 years ago this might be my future). I also get bacterial Bronchitis every year(when I was young that ALWAYS stumped the pulmonologist Lol).
Great right?
DONT SMOKE!!!!!!!

I cough all the time. Go through a box of Kleenex in 3 days. Bronchodilators do nothing for my disease unless I'm having an Asthma attack. If my sputum turns yellow and then green? Out comes my Levaquin. Also the mythology of your temps being normal at 98.7. Hogwash everyone is different. Some have temps that are normal at 96.5 etc. If you feel bad? You know your body best. If the bronchodilators help keep using them!

Do you use MDIs? I have an air compressor to take nebulizers. It goes up to 8 LPM. And takes 30+ mins to nebulize my Albuterol and Saline. If you have half a cup of product left that's not good. Your not getting it. I don't know what you LPMs are but you might have less then mine at max. Wait for the product to disappear. Take as deep a breath as you can and hold for a few seconds in your lungs. Deep and slow. Watch some TV or listen to music. RELAX. Deep and slow.

Ok so truth. I've taken care of many Bronchiectasis patients.
This is the only thing that works for me. Antibiotics. Cough suppressant that effing works??????? Vicodin or Hycodan cough syrup. Yes really. The problem is Drs giving us what we really need!!!!! OMG it's addictive or can we try something else!!!!!! NO. Addiction??? I'm not abusing Vicodin!!!!!!!! I'M LIVING WITH CONTINUOUS COUGHING!!!!! Chronic illness.

Yes go to the Mayo if you want. You don't need to be worse off.

REPLY
2 replies
gtokaren | @gtokaren | Oct 27, 2023
In reply to @ecmoandrrt "Howdy. Just retired and age 67. Asthmatic since birth and now have Bronchiectasis. I'm also a..." + (show)
@ecmoandrrt

Howdy. Just retired and age 67. Asthmatic since birth and now have Bronchiectasis. I'm also a Registered Respiratory Therapist, ECMO Specialist Perfusion, Transports, NICU/PICU level IV and CCU and Adult ICU and ER Specialist.
35 years.
Ahh Gordonia. Rare. Do you happen to be immunocompromised? Doxy is a good antibiotic for Flu H.
Ok my experience with just getting(two years ago) Bronchiectasis(my Pulmonologist told me 40 years ago this might be my future). I also get bacterial Bronchitis every year(when I was young that ALWAYS stumped the pulmonologist Lol).
Great right?
DONT SMOKE!!!!!!!

I cough all the time. Go through a box of Kleenex in 3 days. Bronchodilators do nothing for my disease unless I'm having an Asthma attack. If my sputum turns yellow and then green? Out comes my Levaquin. Also the mythology of your temps being normal at 98.7. Hogwash everyone is different. Some have temps that are normal at 96.5 etc. If you feel bad? You know your body best. If the bronchodilators help keep using them!

Do you use MDIs? I have an air compressor to take nebulizers. It goes up to 8 LPM. And takes 30+ mins to nebulize my Albuterol and Saline. If you have half a cup of product left that's not good. Your not getting it. I don't know what you LPMs are but you might have less then mine at max. Wait for the product to disappear. Take as deep a breath as you can and hold for a few seconds in your lungs. Deep and slow. Watch some TV or listen to music. RELAX. Deep and slow.

Ok so truth. I've taken care of many Bronchiectasis patients.
This is the only thing that works for me. Antibiotics. Cough suppressant that effing works??????? Vicodin or Hycodan cough syrup. Yes really. The problem is Drs giving us what we really need!!!!! OMG it's addictive or can we try something else!!!!!! NO. Addiction??? I'm not abusing Vicodin!!!!!!!! I'M LIVING WITH CONTINUOUS COUGHING!!!!! Chronic illness.

Yes go to the Mayo if you want. You don't need to be worse off.

Jump to this post

Thank you for your reply. I’m not particularly immune compromised , but have over my lifetime had many many pneumonia and bronchitis episodes. I’ve been hospitalized for pneumonia at least 4 times in my lifetime, most recent was 2018. I do believe I had pneumonia last year. It was one bronchitis attack after another from October through February.
Also, I have an Omron nebulizer which I sent back to them after 1st use when it didn’t seem to work. They sent it back saying it was fine. Perhaps there’s a better product out there somewhere that may work better.

REPLY
1 reply
pled | @pled | Oct 28, 2023
In reply to @gtokaren "Thank you for your reply. I’m not particularly immune compromised , but have over my lifetime..." + (show)
@gtokaren

Thank you for your reply. I’m not particularly immune compromised , but have over my lifetime had many many pneumonia and bronchitis episodes. I’ve been hospitalized for pneumonia at least 4 times in my lifetime, most recent was 2018. I do believe I had pneumonia last year. It was one bronchitis attack after another from October through February.
Also, I have an Omron nebulizer which I sent back to them after 1st use when it didn’t seem to work. They sent it back saying it was fine. Perhaps there’s a better product out there somewhere that may work better.

Jump to this post

I purchased an Omron portable mesh nebulizer for travel It worked when it felt like it. I sent it back to Omron and they sent it back to me saying it was fine as well. I'm not sure I trust them. Just my thought on the subject.

REPLY
rebecross | @rebecross | Oct 28, 2023
In reply to @ecmoandrrt "Howdy. Just retired and age 67. Asthmatic since birth and now have Bronchiectasis. I'm also a..." + (show)
@ecmoandrrt

Howdy. Just retired and age 67. Asthmatic since birth and now have Bronchiectasis. I'm also a Registered Respiratory Therapist, ECMO Specialist Perfusion, Transports, NICU/PICU level IV and CCU and Adult ICU and ER Specialist.
35 years.
Ahh Gordonia. Rare. Do you happen to be immunocompromised? Doxy is a good antibiotic for Flu H.
Ok my experience with just getting(two years ago) Bronchiectasis(my Pulmonologist told me 40 years ago this might be my future). I also get bacterial Bronchitis every year(when I was young that ALWAYS stumped the pulmonologist Lol).
Great right?
DONT SMOKE!!!!!!!

I cough all the time. Go through a box of Kleenex in 3 days. Bronchodilators do nothing for my disease unless I'm having an Asthma attack. If my sputum turns yellow and then green? Out comes my Levaquin. Also the mythology of your temps being normal at 98.7. Hogwash everyone is different. Some have temps that are normal at 96.5 etc. If you feel bad? You know your body best. If the bronchodilators help keep using them!

Do you use MDIs? I have an air compressor to take nebulizers. It goes up to 8 LPM. And takes 30+ mins to nebulize my Albuterol and Saline. If you have half a cup of product left that's not good. Your not getting it. I don't know what you LPMs are but you might have less then mine at max. Wait for the product to disappear. Take as deep a breath as you can and hold for a few seconds in your lungs. Deep and slow. Watch some TV or listen to music. RELAX. Deep and slow.

Ok so truth. I've taken care of many Bronchiectasis patients.
This is the only thing that works for me. Antibiotics. Cough suppressant that effing works??????? Vicodin or Hycodan cough syrup. Yes really. The problem is Drs giving us what we really need!!!!! OMG it's addictive or can we try something else!!!!!! NO. Addiction??? I'm not abusing Vicodin!!!!!!!! I'M LIVING WITH CONTINUOUS COUGHING!!!!! Chronic illness.

Yes go to the Mayo if you want. You don't need to be worse off.

Jump to this post

YES YES YES! Finally a comment supporting my frustration with the EFFECTIVE AND OCCASSIONAL SUPPRESSION of a continual cough!!!
Thank you! I have used narcotics in this way for 20 years. No overdose, I'm not selling it on the street, and if I was "addicted" before my bE diagnosis, I would sure like to be again!!!

REPLY
dwood003 | @dwood003 | Oct 29, 2023

gtokaren, it sounds like a mechanical problem. I mix albuterol 3ml and 7% saline 4ml in the cup, I would continually check the cup, after 25 minutes it would be near empty, all but a few drops. I bought a new compressor from amazon with a digital timer. I could see at a glance my progress, at 25 min I shut it off, look in the cup, Ta! Da! perfect.

REPLY
gtokaren | @gtokaren | Oct 29, 2023

Would you be willing to share the brand? You said compressor, are there other components that go with it too?

REPLY
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