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gj53 (@gj53)

Percussion vest

MAC & Bronchiectasis | Last Active: Dec 4, 2019 | Replies (38)

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@thumperguy

gj, I was dx'd with Bronchiectasis 8 -10 years ago following sudden onset of episodic retching coughing triggered especially when in a reclining or recumbent posture, although they also occurred at other times seemingly without "provocation." It was primarily just a nuisance until it began to result in acute bronchitis attacks a couple of times annually. My doc Rx'd Cipro which always seemed to clear up the bronchitis. At some point though my doc referred me on to a pulmonologist who thought I also had MAC but was unable to achieve lab confirmation of the Dx. So for a few years I just rocked along doing the Cipro thing a couple of times each year.

As years passed the bronchitis flare ups became more frequent and a bit more resistant to treatment. I also moved on to a different pulmonologist who was able to obtain a Respirtec percussion vest (aka, THUMPER). By that time I was old enough to have Medicare coverage and believe it or not, Medicare paid for the thing. I've been using it two years, twice daily for half-hour sessions along with a sodium chloride nebulizer. I've always been a bit puzzled that I have never enjoyed any irrefutable evidence that it really does any good. I do bring up mucous but it's not at all correlated in time with the Thumper sessions, in fact I have no memory of ever producing increased mucous immediately following (or during) a thumping session. Similarly, I have no evidence that the nebulizer is helpful. My hope has been that I would enjoy a decreased frequency of bronchitis flare-ups but frankly they've continued pretty reliably to occur twice a year; troublingly more difficult to resolve as time as passed.

Though I have no evidence that it's helped, I'm afraid to stop, fearing that maybe it is helping and stopping might result in an irreversible set-back.

Initially I worried that being tethered to the contraption twice a day reduced my "usable" day to 23 hours. However, I soon began to use the time to read and have probably expanded my intellectual horizon a bit in the process, despite the somewhat tortuous task of reading bouncing words.

BTW, On a recent CT scan the pulmonologist reported that my MAC condition has actually improved without treatment. I sorta jokingly said, "I must be doing something right." Truth is I may be. For year or so I've been fermenting my own Kimchi and eating a few ounces daily. Recently I read that there exist a "gut/lung axis" suggesting a healthy gut my have a salutary impact on the lungs. And fermented foods are supposed to be faves of our gut microbes. So always in the market for a silver bullet healthwise, I promptly concluded that my Kimchi is curing MAC. Hope this lengthy post doesn't violate a forum maximum rule. Don

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Replies to "gj, I was dx'd with Bronchiectasis 8 -10 years ago following sudden onset of episodic retching..."

@thumperguy Don, I thoroughly enjoyed reading your lengthy post and no, it doesn't violate a forum maximum. And you're a good writer. I loved the line about the "tortuous task of reading bouncing words" and the fact the maybe your kimchi is curing MAC. I also am trying everything hoping for a magic bullet. I was diagnosed three years with MAC and bronchiectasis….did the big three…I think the MAC was probably still there afterwards and then I started the saline solution which I truly believe keeps the MAC at bay but some say it can just go away on its own. I am tortured by a year and eight month old cough that no I wone can seem to figure out and I also cannot lie in a reclining or recumbent position (only when I need to clear my lungs of mucus). The cough started when I got the really bad flu last year and it set in and never left. I'm trying alternative things also and exercising five day a week which has definitely made me stronger.
This chronic lung disease thing is certainly a long and lonely battle but I keep fighting it hoping one day there will be a magic bullet. I was inspired by Daniel Pecaut's book, Beating Bronchiectasis that you can get on Amazon. A small, short read. He didn't have MAC but he worked very hard at getting better and did. I have tried most of the things he said he did in the book. I think this disease is so different for every single person. We just have to find the way that works best for us. Keep on writing. I eat kimchi, too. Nan

Thank you so much for this information! It is encouraging to hear about your MAC improving without the treatment. So far I still feel pretty well with this and the treatment sounds somewhat dubious so have not started antibiotics yet. I have found out so much information from all these posts. Head back to the doc on Dec. 3rd and have lots of new questions for him. I am still pursuing getting through all the red tape to obtain my vest. Now it seems it will be covered but they are still looking into it. Fingers crossed.