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@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.
Replies to "@scoop Thanks for the comments. Yes, my doc and I discussed Brinsupri and I'm expecting the..."
@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
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@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.