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Some thoughts after 10 months of nebbing saline
This time last year I was well into the 2 months of hellish respiratory illness that led to my bronchiectasis diagnosis May 4. After that managing my lungs became my full-time job. I bought a lot of different nebulizers, eventually finding the expensive-but-definitely-worth-it Pari eRapid in August/September. I went from spending two hours a day on lung care to about 30 minutes. Since then I’ve been nebbing 7% saline once a day with the Pari eRapid, as well as masking indoors and avoiding exposure to communicable illnesses as much as possible.
This regimen (just saline, no other drugs) has worked so well I sometimes forget I have the condition, or how serious it is. Sometimes, on days I don’t go outside or don’t see anyone, I even skip a session. On Monday I was reminded why that is a bad idea.
It was warm, so I took a 100km bike ride. When I got home I was tired and decided to skip nebbing, because I hadn’t been exposed to another human. But I woke up in the middle of the night coughing. I dragged myself out of bed to huff saline then, and my nose started bleeding. (Nosebleeds were a big part of my respiratory illness; any other bronchies get those?) I stuffed my nose with a Nampon (if you get nosebleeds use Nampons, they work better than anything) and continued nebbing, spitting out blood not from my lungs but my sinuses. All this put The Fear in me, and brought me right back to April of last year when I was so sick I thought I’d never bike again. I nebbed a second saline vial for good measure, and coughed up a blob yellower-than-usual sputum. Then I exhaled several times into my Aerobika, which I hadn't used in months. Then I went back to bed.
I woke up breathing clearly and extremely grateful. I think about all those times in my life I fell ill, helplessly, when nebbing saline could have helped me so much. I wish I’d known about it years ago.
That incident reminded me that yes I have bronchiectasis, and yes it’s serious even if it’s currently well-managed. I re-committed to maintaining a strict daily nebbing schedule, not skipping, because things could go downhill fast. I love breathing clearly and understand how lucky I am to have found a regimen that works, and that I got diagnosed with BX before developing MAC/NTM. I caught up on this forum, which also reminds me what can happen if my BX gets worse.
Nebbing saline seems to have brought me other benefits. I can sleep on my back again. Before nebbing, I would usually awaken from that position gasping for breath: sleep apnea, I presume. I trained myself to sleep on my back and stomach, which is fine, but I noticed after several months of nebbing that sometimes I would drift off on my back…and wake up on my back, without gasping. I assume my air passages were always a little inflamed before, and nebbing has reduced that to the point my throat doesn’t close off as frequently.
Over the past 10 months friends have suffered their usual seasonal allergies, but I haven’t. Usually I have many weeks of terrible allergy symptoms, but since nebbing daily I’ve hardly noticed anything. Is the saline washing away allergens that would otherwise settle in my lungs and sinuses?
I have had zero nosebleeds this winter, except for the scary one Monday night. I assume nebbing saline has been reducing or preventing inflammation and clearing out irritants. As a frequent nose-bleeder, this is significant.
Thanks everyone for this forum. Reading bronchiectasis forums is how I learned about various nebulizers and found a way to manage my BX that works (there are no BX specialists where I live). This particular forum is my favorite, full of wisdom and sanity. Sending gratitude and best wishes to you all.
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@spider109
I finally bought the Pari e-rapid at the beginning of this year, after much hesitation, thinking that I might need more saline for it to be effective, cost, etc. The best thing about it for me is how deep it gets into my lungs. If I feel like I need a bit more saline (rarely happens now) I’ll add some .9%. Glad I got it!
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4 Reactions@sueinmn Very similar routine! I also use Fluticasone (Flonase) a.m and p,m, as well as Azalastine same times. I am allergic to every type of grass and living in FL I have taken daily allergy meds for years (changing brand every year). Did allergy shorts starting last summer to try to reduce the reaction in my lungs. We also added a large HEPA filter (Blue Air brand) in the living room and a mini HEPA in my bedroom.
I used to use a Neti pot for recurring sinus infections but discontinued due to worries about water quality (plus since adding daily Flonase I’ve only had 1 sinus infection in 10 years).
Lesson learned that during allergy season I can’t back off on airway clearance routine. I stopped for a week before last sputum test in hopes of getting something up to test, then never started back up seeing how I did. It took about 3 weeks (and allergies) to start coughing up stuff in mornings. So now back to daily clearance.
**just a note if anyone wonders: I’ve never done the big 3, infection has always grown “few” with only one time in lower right lobe (from bronc) growing ‘many’.
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1 Reaction@cayenne thank you for responding, I do understand the time difference is amazing. But the worst of my BE is in both lower lobes and towards the back (posterior) therefore that where some of the mucus is that’s Soooo hard to get moving. Do you have the worst of the BE in your lower lobes? I’ve been told that the deeper the BE is in your lungs the harder to expel and therefore harder to get saline to to help thin. Can you tell me where your BE is located in your lungs?
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1 Reaction@spider109
Hmm… I have it in all lobes but worse in upper so my experience might not be very relevant for you.
@sueinmn I also do several things to safeguard my sinuses and breathing. I use two sprays of fluticasone nasal spray in each nostril, I take two Mucinex daily, and I do a nasal rinse every day at bedtime. I also take a cetirizine every night at bedtime. The combination of all those -- in addition to my twice daily breathing treatments -- has worked pretty well for me thus far.
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2 Reactions@sueinmn
I can no longer use flonase due to my nosebleed problem. When allergens are particularly bad I will do a sinus rinse with saline and a squeeze bottle (Neilmed or Guru Nanda) after time outdoors. Seems to rinse out pollen and stuff.
@ddoc79 have you found any relief from the pollen? I’m not able to walk outside without a mask. Also had a rib displaced and very sore back muscles from coughing.
@ckscoville
On the Mucinex . . . do you use the green box or blue box for your Mucinex?
Seems like I cough more on the Green box.
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@1fancydancear Blue box, but frankly I cough very little because of my breathing treatment routine and medication (Trikafta)… unless I’m dealing with a nasty lung infection, which happens periodically.
Thanks. I have blue and green. Tend toward the green mostly. Maybe I will start taking more of the blue box.