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Thanks for your post. It’s encouraging that the disease is getting more attention.
Thank you. It is good to be reminded that this disease is a global one and deserves more attention
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.
No, you don’t need to be “worse off”. Go to Mayo or another specialist hospital before things do get worse!
I don't nebulize albuterol, only 7% saline, but I was having trouble emptying the reservoir. I have found it helps to keep the neb cup tipped up, possibly keeping saliva from running into the apparatus. If you aren't using saline, you might want to talk with your doctor about it. It's a first line of defense for most of us, loosens things up and helps create a toxic environment for the bugs. My first diagnosis treatment was H-influenza, too, then the cultures cam back with MAC. That's almost a year ago, and I'm now in a clinical trial at OHSU for clofazamine.
Wishing you the best.
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I found that the 7% saline left in the small holes of the bebulizer diverter may be difficult to rinse completely out and it became crystals after drying, which would block the passage of air. It cause that 4ml saline cannot be finished in 20 or even 30 minutes.
What I did is put the nebulizer in boiling water for very short time then take it out to a clean plate for air dry,It works at first couple times but then problems come out again..Now I use 90% alcohol rinse for disinfecting neb ,after I rinsed it under very warm water.If it still doesn’t work, I changed it to a new one.I’m using side stream portable neb cup.They’re pretty cheap.
Anyway if you spend 20 minutes still unable to finish 4ml saline it means your neb is stuffed.
Thanks for your reply. I am talking about a brand new out of the box nebulizer that didn’t work first time. I sent it to Omron ($20 to mail it), and they sent it back saying it’s fine. Nothing could be clogged, at this point. Maybe I’ll get a new one that may work?!
Hello, I have started to nebulize with Albuterol and I find that it helps me, now I also started with 3% saline and I find that it gives me a sore throat, I wonder if anyone has had that experience and if I went with 7% saline, it might be better.
Thank you 🙏
The 3% saline also gives me a sore throat and I was wondering the same thing about the 7% saline, would it be less invasive?
7% saline is stronger than 3% saline, so would potentially be more irritating. However, albuterol is also very irritating.
Here are some possible solutions:
Use an albuterol inhaler, 2 puffs, 15-20 minutes before nebulizing. For many it is as effective as the neb.
As for levalbuterol instead of albuterol (neb or inhaler) also gentler on the body.
Pulmosal brand is a buffered saline solution, so the PH is closer to your body fluids. Some find this less irritating.
Rinse and gargle well after nebulizing (and before air clearance) to minimize the time the albuterol and sodium are in your mouth. I also rinse again after airway clearance as the huffing and coughing brings a lot of salt back up into the mouth and throat.
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