Volara-phobia

Posted by coffcoff @coffcoff, 1 day ago

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.

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

scoop | @scoop | 1 day ago

Completely off topic -- have you discussed with your doctor starting Brinsupri? With MAC and BE you have little to lose. If you develop side effects the drug can be stopped and if I understand correctly side effects reversed. Side effects in clinical trials were quite minimal, 3% or less.

I have the same issue as you with the vest. It gave me rib pain and random spasms throughout the day in abdomen. It's sitting there unused. Could NJH use it? I do not have experience with Volara but have heard positive feedback. If it weren't for the Brisupri I would pursue Volara or its competitor Wave something or other. Fingers crossed with Brinsupri.

coffcoff | @coffcoff | 1 day ago

In reply to @scoop "Completely off topic -- have you discussed with your doctor starting Brinsupri? With MAC and BE..." + (show)

@scoop Thanks for the comments. Yes, my doc and I discussed Brinsupri and I'm expecting the first order to arrive tomorrow. He said that it's unknown if the med will help with the MAC but NJH is going to study it. Seems like everyone who wants it now can get it. I'm looking forward to hearing about everyone's experiences on it. My understanding is that it decreases sputum production. But I still need to get up stuff that's down there harboring bacteria, right? Hence the possible need for Volara.

I asked if I could donate the vest to NJH to give to a Cf person or anyone who needs it who doesn't have insurance and they said yes, they could take it. I don't get up there very often but if I can't find anyone local who wants it I'll take it with me next year when I'm back in Denver.

cwal | @cwal | 17 hours ago

In reply to @scoop "Completely off topic -- have you discussed with your doctor starting Brinsupri? With MAC and BE..." + (show)

@scoop Are you taking Brinsupri now? If so, how is it going?

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