How much time do you spend managing bronchiectasis?

Posted by bronchiectasaurus @bronchiectasaurus, Jun 11 9:26am

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.

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

rozie83 | @rozie83 | Jun 22 5:28pm

In reply to @kathyjjb "Hi Roz, did you get my private message? Yes, I'm in Scottsdale, where are you? Kathy" + (show)

Hi Kathy,

I did get a message from you, but I didn't realize it was private. I thought I answered it but don't know where the answer is. How do you do a private message? I wrote you a long answer. I'll try to remember what I said. How should I do that?

Roz

rozie83 | @rozie83 | Jun 22 5:37pm

In reply to @rozie83 "Hi Kathy, I did get a message from you, but I didn't realize it was private...." + (show)

Hi again,

I will be watching a Zoom call at 4, so if I don't answer between 4 and 5:30 that is what I'm doing. I also live in Scottsdale across from Fashion Square Mall. I am widowed, 83 years old, active but with a lot of ailments. This one scares me the most. What also scares me is the amount of time so many people spend just to breathe. Let me know if you found my message I wrote to you yesterday afternoon. The only people I know who have Bronchiectasis are those on this
site or who attended the conference I watched on Zoom. No one whom I've told about me has any idea. Perhaps we could meet for lunch when I get back from my trip to visit my daughter and her daughters in the Bay Area July 6.

Sounds like you have your hands full.

Roz

Sue, Volunteer Mentor | @sueinmn | Jun 22 6:34pm

In reply to @spider109 "Hey Sue, I have to ask this question to you because I do value your knowledge..." + (show)

Spider - You asked, I'll give you my opinion for what it's worth, based on closely following a lot of people whose research and knowledge I respect, including NTM research guru Dr Joe Falkinham, Dr Pamela McShane formerly of UT Tyler, and @becleartoday.

Caveat, I am a minimalist when it comes to gadgets because I have very little counter space, and also spend time in my small camper, so I have only ever used a saucepan on my stovetop.

Yes, a good quality baby bottle sterilizer will adequately sterilize your nebulizer, Aerobika and other equipment. Boiling for 10 minutes will do the same. I don't know if it has been lab-tested, but Dr Falkinham believes that the microwave steam sterilizers, if used long enough, should work too.

Sue, Volunteer Mentor | @sueinmn | Jun 23 10:23am

In reply to @sueinmn "Spider - You asked, I'll give you my opinion for what it's worth, based on closely..." + (show)

CORRECTING MYSELF!
Dr Falkinham just posted on the NTM-ir forum about boiling vs baby bottle sterilizers vs steam
https://connect.ntminfo.org/discussion/using-steam-vs-boiling-for-cleaning-lung-equipment-dr-falkinham
Here is the bottom line according to Dr Falkinham -
Killing germs is a factor of time plus temperature. Boiling for 10 minutes (plus any adjustments for altitude) is the sure way to kill NTM and other bacteria.
Baby bottle sterilizers are effective IF the the equipment is exposed to the (contained) steam plus boiling water for at least 10 minutes.
Other methods (steam bags, pressure cooker) have not been tested. He is looking into getting that done.
Exposure to steam from an open pot/tea kettle is NOT effective for sterilizing because the steam temperature is below 212F when exposed to the ambient temperature.

This is the advice where I will hang my hat - Dr F has dedicated his career to studying NTM and where it lurks.

Caveat: This applies to sterilizing water and boiling equipment only. Drinking water can be purified through a filter with .2 micron pores or smaller. Just remember to sanitize the containers, straws and sippers you use regularly following the manufacturer's directions. Any biofilm in the straw, bottle and lid can be disrupted and rinsed away using Dawn and a bottle brush. There are many sizes of bottle brushes available.

rozie83 | @rozie83 | Jun 23 4:57pm

In reply to @rozie83 "Hi Sue, Thanks for this response and for all your responses which have been very educational..." + (show)

Thank you. I so appreciate your caring. Roz

tte | @tte | Jun 29 12:10pm

In reply to @cwal "That is one of my questions also! It is difficult to know when it is enough..." + (show)

I thought the Pari eFlow was just for Arikayce ? I got one when I got the Arikayce, it came with the first dose box

scoop | @scoop | Jun 29 12:28pm

In reply to @tte "I thought the Pari eFlow was just for Arikayce ? I got one when I got..." + (show)

Insmed Incorporated manufactures the Arikayce and Pari provides the delivery device, aka eFlow, they call it "Lamira". I do not use Arikayce so I do not know how the eFlow and Lamira compare. I do know that the Pari eFlow can be used for saline (I have one and I use it everyday, purchased it outright). It might be that the handset delivered with Arikayce has a different handset than the standalone eFlow.

picartist | @picartist | Jul 26 7:01pm

I was guilty of trying to get it all out and AI told me I was overdoing it and most likely causing a dry nighttime cough. I toned it down without huffing and puffing myself to death and coughing reduced quite a bit.

sheila7a | @sheila7a | Jul 26 9:41pm

In reply to @sueinmn "I think it speaks of peroxide as a general disinfectant, but 3% is not effective against..." + (show)

Thank you.
I found the silicone hot pads at Ace Hardware.
Now I'm hoping my ventilation fan works.
I tried a few times and it just seems to blow air around.
If it doesn't work would a mask be okay to wear while boiling the Aerobika?
I live in a 4 plex. Nice sturdy building with a beautiful view.
Hard to get the landlord to repair anything.

Sue, Volunteer Mentor | @sueinmn | Jul 26 11:09pm

In reply to @sheila7a "Thank you. I found the silicone hot pads at Ace Hardware. Now I'm hoping my ventilation..." + (show)

You don't need a mask when boiling. Just keep the pot on low or medium. Once it starts to boil, cover it and set a timer. When it rings turn it off and let the pot cool. Any steam released at that point is sterile. Don't spend time worrying about little stuff!