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Volara-phobia
I have BE and MAC and have some difficulty coughing up sputum. Until recently I was using a percussion vest but stopped after it became painful to use (osteoporosis) and receiving a new aortic valve which I'm afraid to dislodge with the vibrating. Now my ID doc wants me to use the Volara mechanism. I tried it out at NJH 4 weeks ago. I complained to the RT that my throat was very irritated and dry and she turned the force down on the machine, which helped. But that night I developed a respiratory infection, first a very sore throat, then in my lungs. For the next 2 weeks I was coughing up a lot of green and yellow sputum and now, 4 weeks later, I'm still getting up quite a bit, though at least now it's clear.
My question to all of you is, Have you been using the Volara and if so, would you recommend it? Have you had any problems with it? When Hill Rom called me to set up delivery I told them I didn't want it but now I'm not so sure. If it helps with sputum expulsion it would be a good thing, right? I just don't want Medicare to pay $15,000 for another device I can't use. I have 6 months to decide yea or nay.
Also, any suggestions on what I can do with the vest I'm not using? Medicare is still being billed for it.
Thanks and love to all of you.
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@cwal
I have been on brinsupri one month. I’m hesitant to share so soon how much change I have noticed in my quality of life because they say 2-3 months before expected “changes”.
These are things I have experienced. Decreased mucus production, decreased fatigue, decreased coughing, decreased use of cough drops. I must share at the same time I started on brinsupri, I had also started on stiolto to to control my worsening cough this past year. but I am hopeful about feeling better and staying healthier. my regimen of 7% nacl nebs and act twice daily remains the same. and i have been mac free for almost 3 years.but have BE. I hope this helps .
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7 Reactions@crepass
I would say that is some good results at just one month! Glad you are doing better! Thanks for posting an update about how the new drug seems to be working for you. Hope others will answer regarding this as well.
@cwal @crepass I started a new thread on the topic, as this one has gone far afield!
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2 Reactions@crepass Would you mind copying and pasting this helpful post to the new thread @scoop just started?
https://connect.mayoclinic.org/discussion/brinsupri-follow-up/
I would do it for you, but it's not possible.
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1 Reaction@sueinmn
I’m still a bit tech challenged (especially on my phone). thanks for the encouragement.