1. < MAC & Bronchiectasis

Using the Smartvest

Posted by lvalenti @lvalenti, Jul 7, 2023

I recently started using the Smartvest along with nebulizing Albuterol, sodium chloride, Arikayce and using the aerobika. It is very time consuming and I’m interested to know from anyone else doing the same what order they are using and how they are managing it all. Thank you.

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scoop | @scoop | Jul 9, 2023

The first postural drainage handout was given to me by RT many years ago and the other I copied from a book. Likely there are Youtube videos out there that explain each position in detail. Hope these help someone!

Shared files

BE postural drainage (BE-postural-drainage.pdf)

REPLY
fdixon63 | @fdixon63 | Jul 10, 2023
In reply to @pled "lvalenti, I'm not sure if I got this information from a post in this group, or..." + (show)
@pled

lvalenti, I'm not sure if I got this information from a post in this group, or if I found it during an independent google search. It is put out by Cambridge University in conjunction with the National Health system in Britain. The address is https://www.cuh.nhs.uk/patient-information/postural -drainage.
I had noticed a long time ago that whenever I laid flat on my back with my knees up, my chest would open up and I would cough in a way that I didn't cough otherwise. I didn't understand that I was coughing up gunk, because I was laying on my back and I just swallowed it. After spending time on this site, I kind of put two and two together and realized that this was probably something I could do on purpose and that it was called postural drainage, and it would be good for me.
This Cambridge/NHS paper gives many different positions that correlate to the different parts of your lungs. I am just doing one position at this time, based on the information in the report from my most recent CT. I am looking forward to talking with my pulmonologist about this, and honestly, I wonder why I had to "discover" this by myself.
I am feeling so much better since adding this to my routine. It makes me feel like all the efforts are worth it. Good luck to you.

Jump to this post

Enjoyed reading your post. My first pulmonary doc never gave me any literature or sites to go to for information. He never said anything about flutter devices or even nebulizing--antibiotics. His final comment, "I don't think I can help you." BTW no referrals either. I might as well had been seeing a veterinarian. Finding this forum and becoming an internet searcher is what I had to do to get help (found a doctor thru here) and get better. Appreciate all the tips, hints and accidental discoveries.

REPLY
1 reply
lvalenti | @lvalenti | Jul 10, 2023
In reply to @pled "lvalenti, I'm not sure if I got this information from a post in this group, or..." + (show)
@pled

lvalenti, I'm not sure if I got this information from a post in this group, or if I found it during an independent google search. It is put out by Cambridge University in conjunction with the National Health system in Britain. The address is https://www.cuh.nhs.uk/patient-information/postural -drainage.
I had noticed a long time ago that whenever I laid flat on my back with my knees up, my chest would open up and I would cough in a way that I didn't cough otherwise. I didn't understand that I was coughing up gunk, because I was laying on my back and I just swallowed it. After spending time on this site, I kind of put two and two together and realized that this was probably something I could do on purpose and that it was called postural drainage, and it would be good for me.
This Cambridge/NHS paper gives many different positions that correlate to the different parts of your lungs. I am just doing one position at this time, based on the information in the report from my most recent CT. I am looking forward to talking with my pulmonologist about this, and honestly, I wonder why I had to "discover" this by myself.
I am feeling so much better since adding this to my routine. It makes me feel like all the efforts are worth it. Good luck to you.

Jump to this post

Thank you so much @pled. I will check them out.

REPLY
davis5663 | @davis5663 | Jul 17, 2023
In reply to @tinaesims "I use the vest at the same time as I'm nebulizing. 20 minutes twice a day." + (show)
@tinaesims

I use the vest at the same time as I'm nebulizing. 20 minutes twice a day.

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Do you also need to use an aerobika with the vest or does the vest take the place of it?

REPLY
2 replies
Tina Sims | @tinaesims | Jul 18, 2023
In reply to @davis5663 "Do you also need to use an aerobika with the vest or does the vest take..." + (show)
@davis5663

Do you also need to use an aerobika with the vest or does the vest take the place of it?

Jump to this post

I use the aerobic to nebulize my saline solution at the same time I use the vest. The vest takes the place of it.

REPLY
Arlo | @equanimous | Jul 19, 2023
In reply to @fdixon63 "Enjoyed reading your post. My first pulmonary doc never gave me any literature or sites to..." + (show)
@fdixon63

Enjoyed reading your post. My first pulmonary doc never gave me any literature or sites to go to for information. He never said anything about flutter devices or even nebulizing--antibiotics. His final comment, "I don't think I can help you." BTW no referrals either. I might as well had been seeing a veterinarian. Finding this forum and becoming an internet searcher is what I had to do to get help (found a doctor thru here) and get better. Appreciate all the tips, hints and accidental discoveries.

Jump to this post

Yes, I find it astounding how little some pulmonologists know! Mine never mentioned a word about nebulized hypertonic saline or airway clearance techniques. I am now streaming the 6th World Bronchiectasis Conference being held in New York. One comment, from a foremost expert/researcher was "Bronchiectasis is a much neglected disease." It is inspiring to see experts from all over the globe coming together to shine light on BE and NTM. And, agreed, thank goodness for our Mayo Clinic group. I've received such important information regarding the management and treatment of BE and MAC. Thank you everyone!

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Jul 19, 2023
In reply to @equanimous "Yes, I find it astounding how little some pulmonologists know! Mine never mentioned a word about..." + (show)
@equanimous

Yes, I find it astounding how little some pulmonologists know! Mine never mentioned a word about nebulized hypertonic saline or airway clearance techniques. I am now streaming the 6th World Bronchiectasis Conference being held in New York. One comment, from a foremost expert/researcher was "Bronchiectasis is a much neglected disease." It is inspiring to see experts from all over the globe coming together to shine light on BE and NTM. And, agreed, thank goodness for our Mayo Clinic group. I've received such important information regarding the management and treatment of BE and MAC. Thank you everyone!

Jump to this post

Every time I read "...Mine never mentioned a word about nebulized hypertonic saline or airway clearance techniques..." I want to scream. We all have access to the Web, and so do they. If unfamiliar with Bronchiectasis, even a rudimentary search turns up these recommendations. And doctors (primarily specialists) who are unfamiliar with uncommon or rare conditions NEED to tell their patients and offer the option of referring them on if they do not have co0lleagues with whom they can consult.
I am convinced that finding Mayo Connect saved me - even though my pulmonologist and his nurse were familiar with MAC & bronchiectasis, he was not very forward-thinking or open to questions. At least they immediately taught me airway clearance (hand-on.)
Sue

REPLY
tconz | @tconz | Jul 20, 2023
In reply to @davis5663 "Do you also need to use an aerobika with the vest or does the vest take..." + (show)
@davis5663

Do you also need to use an aerobika with the vest or does the vest take the place of it?

Jump to this post

When I was at NJH recently they told me to ALWAYS use the aerobika and vest while nebbing the sodium chloride and levabuteral. I was told NOT to use aerobika or vest when nabbing the amikacin.

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1 reply
davis5663 | @davis5663 | Jul 20, 2023

Thank you so much! My trainer for the vest said I didn't need to use the aerobika anymore because the vest would take the place of it. But I questioned that.

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1 reply
Arlo | @equanimous | Jul 20, 2023
In reply to @davis5663 "Thank you so much! My trainer for the vest said I didn't need to use the..." + (show)
@davis5663

Thank you so much! My trainer for the vest said I didn't need to use the aerobika anymore because the vest would take the place of it. But I questioned that.

Jump to this post

All I know is, with the Aerobika, I cough up A LOT of mucus. With the vest, nothing seems to happen. Or, very little if I stop the vest in the middle of treatment and do huff cough.

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