Thanks for sharing Katie!

Thanks for sharing JT! This is very helpful :)

I have a question to folks - do you typically use the flutter valve laying down? I have heard this before, but I do it sitting up, right after nebulizer treatment. Thanks!

@Maggie O Hi! Good question. In the hospital, we encouraged those who needed/used the flutter valve to use it either way. Quite a few of my patients liked to use it in different postural drainage positions to help mobilize the mucus out of the different lung segments. (Which makes the most sense to me.) However, some used it only sitting up with larger, deeper breaths.  As an RT, my first objective what to get the patient consistent with using the device. After it became routine, we would focus on what felt more therapeutic. 

Thank you @@ChristinaH! The flutter valve doesn't produce much mucus at all generally. And not until after a while after I have used it. Is that normal?

@Maggie O Hi there! Unfortunate "normal" is different for everyone with bronch and NTM. My best advice is to try different methods to see what works the best for you. One of the major challenges to this diagnosis is that patients respond to airway clearance methods differently. Some patients don't struggle with copious amounts of mucus at all. Depending on seasonal changes, flare-ups and the like... you might find you have to switch airway clearance techniques throughout the year. It's tough...

Hi @tabbits. Wonderful feedback. Drinking warm fluids is a great tip! Thank you!

It is so interesting that brochiectasis seems so different for all of us. It is the same for me as @tabbits that I don't expel a lot of mucus. I have to work to get it out. When I have a flare-up and don't feel well, and I cannot exercise much, I generally have none or very little mucus released.

How do you attach the acapella to the nebulizer?  I found the acapella does nothing for me and where years back the nebulizer with Albuterol seemed to help I don't find it does much anymore.  I read about 'normal saline solution' and asked my Dr. last week and he finally gave me a script whereas he had always said in the past I didn't need it.  Caught him on a busy day I think.  So will that solution do more for me than Albuterol or can they be mixed for better result and what does the Acapella do when it's attached - IF I can attach it.
Thankyou!

Hi Tabbits,

The Acapella valve will not attach to the nebulizer, but the Aerobika valve will. Instead of normal saline solution, I use 7% hypertonic saline solution in the nebulizer. It is saltier than the lungs are used to, so it irritates the lungs and loosens the mucus so that it is easier to cough it up.
Albuterol is a steroid that is meant to open up the airways. In my case, the doctor prescribed Albuterol in an inhaler, to be taken prior to using the nebulizer.

OK so I guess it's the hypertonic solution I was wanting and may have asked for in the past and the doctor said I didn't need it.  I wanted to try it to see if it would help do more for me than the Albuterol which just makes me cough but does not help with mucus nor does it really stop me wheezing.  You are using 7% - does that make you cough as you nebulize?  Or do u bring up the mucus later?   Should I try and start with 3% or go right to 7% ?

Albuterol, by the way is not  a steroid - many people think it is, but it's a beta- agonist that relaxes the muscles so it's easier to breathe.    I could do that as my emergency inhaler is Albuterol.  I think when I cough it's from the nebulizing mist hitting the back of my throat -        I have that same problem when trying to sleep - the A/C in the ceiling blows and hits me right in the face and I cough, also hard to believe but my air cleaner sitting on a dresser with vents pointed backwards away from the bed, I'm still getting air movement from air being sucked into the machine at the front, so I turn it sideways so no part of the machine is facing me and that solves that.   I didn't believe it myself until I proved it.

Hi Tabbits,

Yes, now that you mention it, I remember the doctor calling Albuterol a beta-agonist. My routine lasts 30 minutes. I use the Albuterol inhaler then the nebulizer with 7% for the first fifteen minutes, and the vest goes for the whole 30 minutes. I take a break every five minutes to cough up sputum.
I don't know how the doctor decides between 3 and 7%.
If the ceiling mounted A/C vent is a problem, you can get a plastic diverter at the hardware store to redirect the air.

Great feedback Kandy! Thank you! 

Your very welcome!! 

I am now back to pulmonary rehab using the Life2000.  45 min not bad for being gone almost a year due to covid.  I started rehab 2012.  Nice to get back again but its not easy at all.  Dec 2nd I will be having pfts and I am sure I have dropped in my Fev 1 also due to covid I had end March into April.  Its a struggle every day.  

Kandy,
Glad to see you on the site. Congratulations 🎉on being able to do 45 minutes. We must focus on what we can do, not what we cannot do. Keep us posted on your progress. 

Hi @Carolynn. You can use your flutter valve in various postural drainage positions in order to target specific lobes of the lung.  Use it sitting up and laying on your sides as well! :)

@ChristinaH 
Thank you...after reading the comments...I will try different positions.  I really get a lot out while sitting and doing my 7% saline nebs.  I appreciate any help I can get.  I finally have been feeling better the last 6 weeks.  The summer was pretty much a wash with different antibiotics, steroids,  low grade temps, etc until they finally did the CXR, then the CT which got me an appointment with a pulmonologist & some good treatment.  I think I have NTM from the culture...but will see what ID says Wednesday.  Again...thank you.  Forgive me for rambling.  I have no one to talk to about this.  

You have every right to as you say, ramble.  We all need someone to vent to  whether  online or in person. about this unfamiliar condition.  Good luck tomorrow w the ID doctor.

@Carolynn
You are in same position I found myself in many years ago with a funky culture which turned out to be NTM gordonae.  I went to ID doctor also and was advised not to do any drugs for it - this particular strain can be a false alarm so I did as she told me and since I was not sick I just went on as usual and had another test at some point, which I think was normal.  I was never sick.   Then a year or so later I got a MAC dx and that time I was a bit concerned BUT I had joined a support group for NTM and learned a lot & met a lot of people who all help in one way or another;  I didn't want the drugs, probably did some praying but I also went to a natural doctor who I'd been to before for vitamin/supplement suggestions and this time I had Vitamin C IVs once a week for 10 wks.  Medicare covered them back then (they do not now).  At the end of 10 weeks I felt basically the same as I still never felt sick, had another culture done and it came back negative.  I told myself and want to believe that the Vitamin C IVs did the trick.  The doctor told me it did - he was pleased.  I have not had a culture come back since with NTM.  He did advise I take 8,000 mg a day of oral Vitamin C which I was able to keep up for about 2-3 years.  That was probably about 7 years ago.  Good luck with your next appt or testing.   I hope there is something in here that will help you, and chances are your next culture may not have anything to worry about.  

Tabbits
I am glad to read that you are doing well.
I am curious about how many members a
So have low vitamin C levels. The pandemic encouraged many to assess and increase their vit D levels but not much is spoken about the assessment of Vit C levels.  I was also informed that my vitamin C levels were low recently. I cannot take oral Vitamin C supplements.  I supplement w a kiwi everyday, broccoli and other vit c rich foods.   Any other suggestions? Katie

Can you take Emergen-c its very good you put it in water.  Its 1,000mg of vit c.  

@Carolynn Thank you for sharing. We are here to listen to you.