Airway clearance not working?

Hi Ling, sorry you’re having such a hard time. I too noticed that my mucus was so much harder to expel when I was told I had heavy growth of a bacteria called “Klebesilla Pneumonie” or something like that. I’ve tried every airway clearing technique possible I believe, vest, aerobika, postural drainage, etc. I only recently found that the Autogenic Drainage seems to work best for me. Before that I did the Areobika and that did well until January of this year when I got that bacteria I mentioned. The pulmonologist I see at Mayo said it’s just colonization, but I can definitely tell you it’s made it much harder doing my ACT. I’m easily doing 45 - 60 mins each am & pm session, and I feel most of the time I still have some left in my lungs. I’ve pretty much accepted that I’ll do the best I can at each session enjoy my day until the next session. I am lucky at my home Pulmonologist (UVM) I’m gonna see a pulmonologist there that specializes in treating cystic fibrosis patients. Now I’ve tested negative for that but because of the amount of mucus I apparently have, maybe I can get som good advice or ideas, and will definitely pass them on to this forum. My appointment is 5/22. I have so many more experiences to share about my journey with BE, as we all do, but not enough time in the day to share. In the meantime WE MUST drive on hopefully Brensocatib and other medications are just around the corner that will help us even more. God bless you & stay strong!!!

Hi Ling, sorry you’re having such a hard time. I too noticed that my mucus was so much harder to expel when I was told I had heavy growth of a bacteria called “Klebesilla Pneumonie” or something like that. I’ve tried every airway clearing technique possible I believe, vest, aerobika, postural drainage, etc. I only recently found that the Autogenic Drainage seems to work best for me. Before that I did the Areobika and that did well until January of this year when I got that bacteria I mentioned. The pulmonologist I see at Mayo said it’s just colonization, but I can definitely tell you it’s made it much harder doing my ACT. I’m easily doing 45 - 60 mins each am & pm session, and I feel most of the time I still have some left in my lungs. I’ve pretty much accepted that I’ll do the best I can at each session enjoy my day until the next session. I am lucky at my home Pulmonologist (UVM) I’m gonna see a pulmonologist there that specializes in treating cystic fibrosis patients. Now I’ve tested negative for that but because of the amount of mucus I apparently have, maybe I can get som good advice or ideas, and will definitely pass them on to this forum. My appointment is 5/22. I have so many more experiences to share about my journey with BE, as we all do, but not enough time in the day to share. In the meantime WE MUST drive on hopefully Brensocatib and other medications are just around the corner that will help us even more. God bless you & stay strong!!!

Long, I always get the most mucus up with nebulizing saline by waiting at least 20 minutes after my Levalbuterol puffs. I nebulize for about 25 minutes and inhale deeply and hold it a bit before exhaling. By the time I finish and do some huff coughing, I bring up good sputum.

Than I sit up using the Aerobika and after that lie on the bed with a wedge pillow under my hips. I do the airway clearance on my right side, left side, and back.

That usually helps me bring up some more, and then when I am cleaning my equipment, I might bring up a little more.

We are all different in what works best for us. I am bringing up about a Tbsp twice a day since I had my upper and lower lingula removed.

Thank you so much @formergardener for sharing your ACT My pulmonologist has ordered a vest for me, I will try to see if that works for me.

Take care!
Ling

Long, I always get the most mucus up with nebulizing saline by waiting at least 20 minutes after my Levalbuterol puffs. I nebulize for about 25 minutes and inhale deeply and hold it a bit before exhaling. By the time I finish and do some huff coughing, I bring up good sputum.

Than I sit up using the Aerobika and after that lie on the bed with a wedge pillow under my hips. I do the airway clearance on my right side, left side, and back.

That usually helps me bring up some more, and then when I am cleaning my equipment, I might bring up a little more.

We are all different in what works best for us. I am bringing up about a Tbsp twice a day since I had my upper and lower lingula removed.

Good morning formergardener. I wonder how long you work with aerobika And what kind of airway clearance and how long? Thank you

Hello, @lilianna. I would say that I use the Aerobika for a maximum of 15 minutes, usually 10.

I do 3 smaller inhales with holding and then breathing out, followed by three moderate inhales with holding and then breathing out, and then three deep inhaled with holding and then breathing out. I do this first in the sitting position, then lying down on the bed on my right side with bottom elevated with a wedge pillow. Then I shift to a diagonal position and repeat, followed by on my back with repeat, and finally on my left side with repeat. Sometimes I will stand on the floor and bend over, supporting myself on something, and repeat in that position.

I also walk briskly two miles each day, followed by up and down a set of 24 stairs four times.

I also sometimes do deep breathing with holds and exhaling during the day.

One thing that really helps me is to drink hot beverages because they help to loosen mucus. I take a time released Guaifenesin morning and evening along with a 600 mg NAC morning and evening.

Another thing I do daily is to grate a garlic clove over a couple of tsp dried thyme and cover with olive oil. I let it sit for a while, and then I use a good bread to mop it up. It burns the mouth a little, but it helps to open my airways and to keep infections away. I believe it may also help to prevent fungal infections because garlic is known for that. That is just my personal routine!

Hi @formergardener,
How interesting, the way you use Aerobika, (3 various breaths each time, you do mean when you use aerobika , right? ) were you taught by NJH? That makes a lot of sense. How long have you been taking garlic like this? And how long have you been safe from infection? Thank you so much for sharing.
Ling

Hi, @ling. I have never been to NJH, as I live in central Texas, and the logistics are difficult. However, I have been fortunate to be treated at UTHSC in Tyler, TX. I was given hands on airway clearance during my first visit there, and Dr. McShane also posted U Tube videos about airway clearance. I had read about clearing the smaller airways, then the medium, and then the larger.

I was using garlic even before I was diagnosed. I have allergies and found myself having more drainage, and the garlic helped to clear me. Grating the garlic and letting it sit for a bit before eating helps to retain and increase benefits. I also find that when I make stir fry with lots of fresh ginger, I also clear more sputum.

I have been culture negative for 19 months and was due to stop meds in April, but since I had the lung surgery to remove the upper and lower lingula, I was told to continue the meds for three more months. The pathology cultures were also negative, but they showed a stubborn lateral left lung area with thick, white mucus that I was never able to clear. This was due to the varicoid bronchiectasis in that area. Other areas of bronchiectasis are mild. My right lung is barely affected, although it does have some bronchiectasis.

I should add that I always mask at the grocery store and in public places to protect myself. I believe that this helps to keep me free from infections. I also boil my drinking water and use Lifestraw pitcher water for tooth brushing and for cleaning vegetables and fruits. I no longer garden because I believe that this was the source of my Mycobacterium intracellulare infection.

I think that meds alone cannot control MAC, since it is everywhere. I avoid showers and instead take shallow baths and wash my hair under running water while masking. Sometimes I use a nose clip and remove it periodically to refresh my breath while hair washing.

This is time consuming and inconvenient, I must admit, but if it can help to keep me off of meds and to prevent more lung damage, I will do it. I am so grateful to have been able to have surgery four weeks ago that will lower my future risks, as long as I maintain airway clearance and precautions. I recognize that I must take these precautions for the rest of my life.