Brinsupri experience after 3+ months

@scoop
Oh, good for you Lucky you with that one in particular...."cultures remain negative and I continue to feel well." True, "no reason to subject to radiation."

Yes, it is the one thing I am thinking seriously about, starting the Brinsupri , due to the mucus and mucus plugs that I always have. I must have some deep "pockets" in those damaged lungs of mine with the cause of the nearly constant mucus and mucus plugs.
MAI still remains at a low load. As a matter of fact, I am waiting on the Tyler sputum results in that they kept it longer under 'watch" etc. because they couldn't get anything to fully grow. Going on nine weeks working with it at the lab. They did say Intercellular. All I can do it wait and then ask questions!
I know we don't know much about it, the Brinsupri, in terms of long term and long term usage and possible long term findings/outcomes.
However, again it is that thing called quality of life while living the now and at nearly 84....I think it is time to possibly "go for it." Hard decision with not being on any med's except the saline. Avoided med's all my life until the Bronchiectasis and infection.
Thanks for your response and detail.
Barbara

@blm1007blm1007
Pulmonary doesn’t see a need to repeat the scan as long as my sputum cultures remain negative and I continue to feel well. At this time, I don’t see a reason to subject myself to more radiation. If a new scan could potentially change my treatment, I’d consider having one. For example, if it might support cutting back on my 2x/day airway clearance, I’d be interested. If my phlegm production magically disappeared and there was reason to think some lung remodeling had occurred, I’d be curious to see whether a scan would show that and whether it might change what I need to do.

My sputum production has decreased, but it has not disappeared. Overall, I feel much better health-wise than I did before starting Brinsupri.

So frustrating for you to spend so long on airway clearance. That used to be me even though the advice was no longer than 15-20 minutes. Perhaps stop after 10-15 minutes and repeat an addition session, keeping that short too? All the time spent doing airway clearance was part of the calculus in deciding to start brinsupri or not. For me it was an easy decision.

@blm1007blm1007 Hi Barbara. Has your pulmonologist suggested you try the Brinsupri? I have been on it for six months now and am very pleased with the results. A couple of weeks ago, I caught a bad cold, which usually turns into pneumonia for me because I have colonized pseudomonas. But this time, I recovered in a few days with no antibiotics and no further exacerbation! Hallelujah!

If you don't like it for any reason, you can always stop, right? Good luck with your decision.

Thank you all for the helpful, detailed advice and for sharing the positive attitudes you have developed. I know I need to "pull up my bootstraps" and quit feeling sorry for myself! That only makes it harder for my body to fight all this. Hopefully one day I will be sharing a success story that will help someone else.

This platform(Mayo Connect) has been what is pushing me through - lucky that it is a "thing". I did register for the NJH seminar; will have to listen online but maybe can attend in person one day. I see a pulmonologist at the Medical College of Georgia who seems very familiar with all this, although MCG isn't a "Center of Excellence". She did mention some of her patients go "down the road" to a CoE in Atlanta (Emory) or Charleston(MUSC) but most come back to her as treatment same. Kinda encouraging.

I like the comment that most people 65+ are dealing with something age-related! I forget I'm not 25, young and free and unencumbered by health concerns!

@blm1007blm1007 Hi, just read this hours later. If your mucus is coming up, why do you need extra airway clearance. I am probably not in as good of shape as you, and I certainly have more advanced BE. I am counting my vest and nebulizing treatments (2X) as airway clearance. When it starts coming up I do more of a hock than a huff, because huffing just isn't going to shift it. I have a hard time doing gravity based clearance techniques. I walk twice a day, and that starts things moving a while after I get home. I dread winter because of my lack of activity compared to spring and summer. Do you take mucinex? I'm quite certain that after being on Brinsupri for 2 months there's definitely less mucus (and less fatigue), but I am scared to forego the mucinex, because I don't want to ever start plugging up again. That's what got me in real trouble, skipping mucinex. I hate the dry feeling, and dry mouth. I had dental cavities from dry mouth, when I started on Mucinex a few years ago, and now, I even have a visible tooth cavity from dry mouth...never, ever had a visible cavity. I'm over-due 3 months on my dental checkup because of being so ill this spring/summer. Now I'm scrambling to get into the dentist anywhere, since my dentist couldn't see me until late Oct. Oh, and being on MAI drugs and getting so thin, I am supposed to eat many meals a day - pretty hard to do, with treatments, walking etc. Then I've been cleaning my teeth thoroughly after each of these small meals. One problem can cascade into many.

@ursala7 First, do you call the dentist office to check to see if there has been a cancelation. I do that often each morning during the week until they say yes, we can see you.
Dry Mouth: Do you know if you sleep with your mouth open at night. Many begin to do this and it can cause dry mouth. I, as well as Scoop tape our mouths closed with 3M micropore tape a piece the size of a postage stamp, as scoop would say. It helps with the dry mouth.
Extra AirWay Clearance. Want to get all that mucus moving up and out. Actually I haven't done the extra clearance yet!!!
Hack vs Huff Cough: Be careful. The wrong type of cough isn't good for the lungs. My speech therapist said hacking is a no, no due to possible problems it would cause with the vocal cords. I wish I could describe how she told me to help get it up and moving. More or less repeat and slowly say a moderate huh, huh. Have you been referred to a Speech Therapist...a Speech Therapist has helped a couple of us on Mayo with Bronchiectasis.
Mouth/Teeth: For me I use my boiled water with salt in it. I keep a small jar in the medicine cabinet and clean/refill as needed to rinse my mouth out after brushing my teeth. I think it helps in various ways. Might be worth a try. No cavities so far, but we are all different.
Mucinex: I don't use it yet. Many do however. You know what is best for you overall and your experiences when you are or are not using it.

"Cascade into many"...would like for all good things to 'cascade' for you and all of us with the 'no fun' routine with Bronchiectasis.
Barbara

@blm1007blm1007 All such good suggestions. I have been boiling my electric toothbrushes each day. Then, when I go to brush, I turn on the tap to wet the brush, and I think, "oh no, I've just contaminated it". So I like your idea about the salt water. But at the end of the day, when I boil those brushes and see little remnants of debris, I think, that's what's in that brush that doesn't get rinsed away.
I have tried taping my mouth, but being I cough up phlegm at night which has to be put into a tissue, the tape comes lose, and it does feel a little suffocating to me. I keep trying to tape off and on. Good idea about calling the dental clinic. Yes, they must have cancellations at times.
I'm hoping its the mullein tea that has stained my teeth in two places (maybe because of plaque), and not cavities, but regardless, plaque is a problem for me with this dry mouth.
Thanks for all the suggestions.

@blm1007blm1007 All such good suggestions. I have been boiling my electric toothbrushes each day. Then, when I go to brush, I turn on the tap to wet the brush, and I think, "oh no, I've just contaminated it". So I like your idea about the salt water. But at the end of the day, when I boil those brushes and see little remnants of debris, I think, that's what's in that brush that doesn't get rinsed away.
I have tried taping my mouth, but being I cough up phlegm at night which has to be put into a tissue, the tape comes lose, and it does feel a little suffocating to me. I keep trying to tape off and on. Good idea about calling the dental clinic. Yes, they must have cancellations at times.
I'm hoping its the mullein tea that has stained my teeth in two places (maybe because of plaque), and not cavities, but regardless, plaque is a problem for me with this dry mouth.
Thanks for all the suggestions.

@ursala7 Toothbrush. Next to my jar with salt water is another jar with 3/4 boiled purified water and 1/4 strong vinegar. I keep my toothbrush in it, in the medicine cabinet, while not being used. For me I feel safe with that. Of course I toss the brush and get a new one a good few times, as much as I feel I need to, for me. Yes, I also turn on the cold tap side to rinse the brush, oh well...so far I think it is all working O.K.
Taping. When I wake up at night I take the tape off, place the little piece on the tape dispenser while I clear my mucus before walking down the hall to do what my bladder has asked me to do. I can use the one tape piece two times each night. Clear the mucus again before going back to sleep also. What fun!!!!
Barbara