National Jewish NTM & Bronchiectasis 2026 Recordings

Posted by becleartoday @becleartoday, Sep 24 7:56pm

Playlist of all presentations from NJH's 2026 patient conference

https://youtube.com/playlist

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

This looks like a short video . Is the full recording available yet?

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Profile picture for cholash @cholash

This looks like a short video . Is the full recording available yet?

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@cholash Thank you! I should have put up the playlist!!!

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Profile picture for cholash @cholash

This looks like a short video . Is the full recording available yet?

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@cholash If you select "Watch on YouTube " the other videos from the conference are listed in the side panel and you can just work your way through them.

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Profile picture for Sue, Volunteer Mentor @sueinmn

@cholash If you select "Watch on YouTube " the other videos from the conference are listed in the side panel and you can just work your way through them.

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@sueinmn thanks so much!

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Dr. Honda said to soak shower head monthly in 6% bleach after giving it a soak in Dawn to get at the biofilms. Is this bleach straight from the Clorox container? And for how long? And what do you do with the bleach afterwards? I have not been doing this but rather depending on turning up the water heater alone to over 130F. Not sure if this is enough!

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Profile picture for scoop @scoop

Dr. Honda said to soak shower head monthly in 6% bleach after giving it a soak in Dawn to get at the biofilms. Is this bleach straight from the Clorox container? And for how long? And what do you do with the bleach afterwards? I have not been doing this but rather depending on turning up the water heater alone to over 130F. Not sure if this is enough!

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@scoop Bleach (full strength) is pretty corrosive and I'm pretty sure it would eventually damage the finish. If you look at the slides, Dr Honda gave a range of choices for your showerhead like alcohol and boiling.
My pulmonologist and I have a slight disagreement on this issue - I turned up my water heater, give the showerhead an occasional scrub with detergent and a brush, and call it "good enough." She thinks I should replace it every six months.
If you do bleach it, just do it before laundry day, throw it in the washer with a load of bleachable whites. Or use it to bleach toilets or the kitchen sink. Or wash it down the drain. Putting bleach down the drain is not recommended if you are on a septic system - it damages the bacteria that digests the waste.

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Profile picture for scoop @scoop

Dr. Honda said to soak shower head monthly in 6% bleach after giving it a soak in Dawn to get at the biofilms. Is this bleach straight from the Clorox container? And for how long? And what do you do with the bleach afterwards? I have not been doing this but rather depending on turning up the water heater alone to over 130F. Not sure if this is enough!

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@scoop, Does your own experience prove that it is enough? I am doing the same. So far so good. Keep my fingers crossed. But I totally understand, with this disease we will never be fully confident no matter what we do. It is sad, isn't it?
Best!
Ling

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Nasal rinsing with distilled water as recommended by the doctor speakers also has me confused. Maybe I missed it but I did not hear them say anything about boiling the distilled water before using. It was my understanding that any water we put in our noses should be boiled first. I continue to use boiled tap water. And I've gone back to boiling my nebulizer in distilled water. My last eRapid handset did not last as long as I would have hoped (treatments started taking too long) and I wonder if the daily steam and dryer diminished its effectiveness. So I am experimenting!

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Profile picture for scoop @scoop

Nasal rinsing with distilled water as recommended by the doctor speakers also has me confused. Maybe I missed it but I did not hear them say anything about boiling the distilled water before using. It was my understanding that any water we put in our noses should be boiled first. I continue to use boiled tap water. And I've gone back to boiling my nebulizer in distilled water. My last eRapid handset did not last as long as I would have hoped (treatments started taking too long) and I wonder if the daily steam and dryer diminished its effectiveness. So I am experimenting!

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@scoop Fear of damaging or reducing the useful life of expensive equipment like then Pari eRapid is why I follow the manufacturer's instructions. Mesh screens are Delicate with a capital D - I'm pretty sure premature failure (leaking) from aggressive treatment is what put Philips Innospire out of business.

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Profile picture for Sue, Volunteer Mentor @sueinmn

@scoop Fear of damaging or reducing the useful life of expensive equipment like then Pari eRapid is why I follow the manufacturer's instructions. Mesh screens are Delicate with a capital D - I'm pretty sure premature failure (leaking) from aggressive treatment is what put Philips Innospire out of business.

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@sueinmn
That's a good reminder to follow the directions!

My theory is that the gold contacts on the InnoSpire Go nebulizer need to be cleaned with rubbing alcohol after each use to maintain connection. And using a baby bottle sterilizer is verboten. It seems to warp the plastic a bit and who knows what it does to the mesh head. The instructions explicitly say, "no steam sterilization". I have 2 still in top notch condition, thankfully. They get boiled for sterilizing.

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