Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
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.
-
Like -
Helpful -
Hug
3 Reactions@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.
-
Like -
Helpful -
Hug
1 Reaction@scoop Are you taking Brinsupri now? If so, how is it going?
I was just notified by the Volara representative that Medicare now will not pay if you have the percussion vest because they are considered to function the same. I believe she said this was a recent change. I would have liked to try the Volara as it has 3 functions and gets meds deeper into lungs from what I was told.
@melinda561 Thanks for that crucial info. A bit unfair since some of us can't use the vest anymore because of bone pain or other reasons. Let's just hope that brensacatib and other new meds help us.
@coffcoff I saw Dr Haas at NJH 1.5 years ago. Fortunately and ironically I may add, the most current scan I had in 10 years actually showed some improvement in my MAC right before I finally made it to Denver. (or at least no further damage), so the dreaded Foursome of drugs was not recommended. The big takeaway from my trip was “airway clearance.” However, I was told this would not really improve the disease, but was merely good “lung hygiene.” Im hearing otherwise in this thread, right? Anyway, I couldn’t do the daily regimen because I spotted blood, and hemoptsis was a big problem for me. My voice is very uneven for years now and I can’t sing anymore. I miss it terribly as it was part of my spiritual practice.
-
Like -
Helpful -
Hug
1 Reaction@ellenblythe I'm so sorry to hear about the change in your voice. It's probably due to all the coughing. You didn't mention whether or not you have bronchiectasis but I assume you do. Airway clearance is the cornerstone of managing bronchiectasis and keeping MAC at bay. It will not improve the lung damage you already have but it can keep it from getting worse. Maybe your doctor can get you on brensocatib, the new drug for bronchiectasis. That and airway clearance is all we've got right now.
@coffcoff I returned the mechanical part of the vest system back to Hill Rom (they paid for the return with a prepaid box to send it in) and they were suppose to reimburse Medicare and my Supplement Insurance for the months I did not use it. I was able to do that because it was within a time period, window of time, where I could. I gave the vest and hoses to a friend who has a child with CF and volunteers in the CF Department at the Children's Hospital in town.
Just a thought if this might help.
Barbara
@melinda561 Depending upon how long you have had the VEST I wonder if they would do an exchange???? Vest for Volara. If that is possible.
Barbara
@blm1007blm1007 I guess I'll give them a call or the local medical supply place I got it from. Thanks for the suggestion.