How much time do you spend managing bronchiectasis?

Posted by bronchiectasaurus @bronchiectasaurus, 6 days ago

I conservatively estimate I spend 2 hours a day doing lung protocol stuff for my bronchiectasis. That includes at least 2 long saline nebulizer/Aerobika sessions, 2 nasal lavages, and rinsing, boiling, sanitizing, prepping (such as boiling, cooling, and storing distilled water for nasal lavage), and other maintenance.

I have — or had — 16 waking hours in a day. With all the lung stuff I now have 14. My day has been reduced by 12.5%. It’s worth it, to be able to breathe and reduce respiratory infections, but it has a real impact.

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@kdiago1564

@bronchiectasaurus

I work full time and have a 3 year old so it's tough. The biggest "time saver" for me when it comes to lung protocol is using the baby bottle sterilizer with the drying cycle. That cuts out the need to boil and prep. Do you use a baby bottle sterilizer?

I don't do a nasal rinse but would be curious to know what your process is. I'm not sure I can do another thing to be honest.

I struggle to do two high quality airway clearance sessions in addition to exercising. I do a quicker airway clearance in the mornings (nebulize and then a few cycles of aerobika) when possible, or in the afternoon if morning isn't possible and then my better (longer) session is before bed. I would say a really good airway clearance session takes me 40m. Then I rinse everything off and drop it in the sterilizer. I sterilize everything each time because it's the path of least resistance.

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I go to a PT breathing specialist at NYU. He showed me how to do the nebulizer with the Aerobika in tandem. You need the Aerobica XL so you can attach them. I am finding that it is much quicker as you’re doing both together and I seem to be getting up the same amount of mucus. But you need to sterilize each time as you are breathing in with the Aerobika as well as out. I do also use a baby bottle sterilizer which saves time.

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@sheila7a

Hi
10-15 minutes of aerobika?
I soak in hydrogen peroxide.
I tried alcohol a couple of times. That smell knocks me out. Oofta!
I looked up if was okay to pour alcohol down drain after using it.
Google said nope could start a fire in your pipes!
Switched to peroxide.
What do you think?
Alcohol takes less time.

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Unfortunately, hydrogen peroxide doesn't kill NTM. Neither does vinegar unless you soak for at least 24 hours at full strength. And you're right, alcohol stinks.
Try to remember to only EXHALE through the Aerobika to minimize inhaling germs.
Wash your dismantled Aerobika with HOT soapy water and a soft brush, rinse and dry on a clean paper towel. This removes the immediate threat and keeps biofilm from forming. Once a week or about that, sterilize by boiling (yes it withstands boiling if it isn't touching the bottom of a metal pot - I use a round silicon hot pad in the bottom of my saucepan) OR in a baby bottle sterilizer. Some people use microwave steam sterilizer bags too.

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@sueinmn

Unfortunately, hydrogen peroxide doesn't kill NTM. Neither does vinegar unless you soak for at least 24 hours at full strength. And you're right, alcohol stinks.
Try to remember to only EXHALE through the Aerobika to minimize inhaling germs.
Wash your dismantled Aerobika with HOT soapy water and a soft brush, rinse and dry on a clean paper towel. This removes the immediate threat and keeps biofilm from forming. Once a week or about that, sterilize by boiling (yes it withstands boiling if it isn't touching the bottom of a metal pot - I use a round silicon hot pad in the bottom of my saucepan) OR in a baby bottle sterilizer. Some people use microwave steam sterilizer bags too.

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Really?
The instruction book I have has steam in microwave, boil, alcohol 15 minutes or hydrogen peroxide 30 minutes.
I will have to look for silicone hot pad. I've never seen before.
Maybe at Kohls or Penneys?
It's good to know that you only exhale. That's what I do.

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Back again!
Do you clean Aerobika once a day?
I've been using a few days and just soak the mouthpiece. Since I only exhale.
I disassemble the Aerobika to dry out. Soak the mouthpiece.
My Pulmonologist said some of his patients don't even clean theirs.
I hope he was exaggerating.

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@sheila7a

Really?
The instruction book I have has steam in microwave, boil, alcohol 15 minutes or hydrogen peroxide 30 minutes.
I will have to look for silicone hot pad. I've never seen before.
Maybe at Kohls or Penneys?
It's good to know that you only exhale. That's what I do.

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I think it speaks of peroxide as a general disinfectant, but 3% is not effective against mycobacteria or Pseudomonas Aueringosa.
Here is an excerpt: "Hydrogen peroxide is mostly bactericidal at 0.5% in 30 min and yeasticidal at 3% in 30 min. A comprehensive fungicidal activity was not seen with 3% hydrogen peroxide in 6 h, similar to a lack of a comprehensive mycobactericidal activity with 3% hydrogen peroxide in 1 h...Hydrogen peroxide increases biofilm formation in A. oleivorans, P. aeruginosa and S. parasanguinis, whereas it is inhibited in Candida spp. In S. epidermidis. the effect depends on the hydrogen peroxide concentration (increase at 1%, inhibition at 0.02–0.25%). Biofilm removal is mostly moderate, e.g. between 55% and 63% for 3% hydrogen peroxide. The potential to cause biofilm fixation is unknown."
https://link.springer.com/chapter/10.1007/978-3-319-98785-9_6
There is a secondary issue with Hydrogen peroxide. Once opened, it rapidly loses its potency, and you cannot rely on the strength after a week or so.

Now for the hot pads - wherever cooking utensils are sold - many sizes and shapes - under $5 each and a lot cheaper online. Just be sure they say "food grade silicone" or similar. If they don't fit my pan, I just cut them with kitchen shears. Saves from melting or deforming Aerobika and nebulizers - especially on an electric stove or my propane campstove that has hotspots on the burner.

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@sheila7a

Back again!
Do you clean Aerobika once a day?
I've been using a few days and just soak the mouthpiece. Since I only exhale.
I disassemble the Aerobika to dry out. Soak the mouthpiece.
My Pulmonologist said some of his patients don't even clean theirs.
I hope he was exaggerating.

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Your pulmonologist is right - mine says she has patients that never clean anything, or just run it under hot water.

I disassemble and wash my Aerobika & nebulizer using Dawn & hot water every day. I disinfect by boiling weekly unless I am ill - then it's daily.

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@sueinmn

I think it speaks of peroxide as a general disinfectant, but 3% is not effective against mycobacteria or Pseudomonas Aueringosa.
Here is an excerpt: "Hydrogen peroxide is mostly bactericidal at 0.5% in 30 min and yeasticidal at 3% in 30 min. A comprehensive fungicidal activity was not seen with 3% hydrogen peroxide in 6 h, similar to a lack of a comprehensive mycobactericidal activity with 3% hydrogen peroxide in 1 h...Hydrogen peroxide increases biofilm formation in A. oleivorans, P. aeruginosa and S. parasanguinis, whereas it is inhibited in Candida spp. In S. epidermidis. the effect depends on the hydrogen peroxide concentration (increase at 1%, inhibition at 0.02–0.25%). Biofilm removal is mostly moderate, e.g. between 55% and 63% for 3% hydrogen peroxide. The potential to cause biofilm fixation is unknown."
https://link.springer.com/chapter/10.1007/978-3-319-98785-9_6
There is a secondary issue with Hydrogen peroxide. Once opened, it rapidly loses its potency, and you cannot rely on the strength after a week or so.

Now for the hot pads - wherever cooking utensils are sold - many sizes and shapes - under $5 each and a lot cheaper online. Just be sure they say "food grade silicone" or similar. If they don't fit my pan, I just cut them with kitchen shears. Saves from melting or deforming Aerobika and nebulizers - especially on an electric stove or my propane campstove that has hotspots on the burner.

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I did not know hydrogen peroxide loses potency so fast. I have a bottle in my medicine cabinet I opened about 4 years ago. Still foams up when I pour it on the open shaft of my electric toothbrush though.

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@pacathy

My pulmonologist agrees with daily even if dry. He also suggested I start 7% saline nebs last fall to try to decrease number of viral illnesses I'd had in previous winters. It did seem to help.

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I switched to the 7% saline nebs and it has made a significant difference in the ease I have in breaking up and expelling the mucous. The one side effect for me that is bothersome is that I cough so hard and deep that I essentially vomit.

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@cwal

Surely the NJH therapists were referring only to the huff-cough part of airway clearance when they said 10-15 minutes? It would be impossible to do it all in that amount of time.

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It takes me 20 min for inhalation therapy. 30 min on CPV therapy plus huffing & coughing. I spend at least 4 hours every day and sometimes more if not breathing good.

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They were talking about the whole thing - using the Aerobika with the Aeroeclipse nebulizer cup at the sametimet- meaning you breath in the saline and you blow out into the Aerobika - for a total of 10-15 minutes. It blew my mind for sure. I now do that technique in the morning, and my longer routine in the evening. I specifically recall PJ McShane say she prefers that these are done separately so that the lungs can get really nice and juicy before doing the Aerobika and huff coughing - so to cover my bases I do one of each technique daily!

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