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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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I have found the same result of not getting sick when everyone else is suffering. Through focusing on airway clearance I am asymptomatic and exercise for two hours a day!
Peace and good health
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4 ReactionsThank you for your post to all of us. I agree we need to stay strong and do all we are able to do to stay strong, healthy (keep the immune system strong) and at peace with how all is for us. Good mental health is so important.
One of my reasons to try to do all that is needed to be done is to avoid a hospital setting.
I'd rather be "alone" at home than "alone" in a hospital with all that they do on a daily basis that doesn't necessarily always allow for one to be able to do all one is able to do for oneself at home in a best way and time factor. It sure breaks up ones routine that is so important for so many reasons.
Barbara
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3 ReactionsDear B-tasaurus,
Which pari erapid model are you using?
J Lotz
@jeanand3
I use the older round model, sold in the US via nebology.
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2 ReactionsDoes anyone know why and how the Pari e-rapid nebulizer seems to be so effective for people using it!! I’ve always been told that the smaller the particles of medicine and or saline are the deeper they get into the lungs. Now I also have bought numerous different nebulizers in the past 5 years, fighting my BE, as the years have passed it seems that they become less effective and efficient, and that’s even after purchasing new compressors and nebbing cups. I would love to try one but the nearly $1000 price tag holds me back!!! What if it doesn’t help?? Any thoughts or ideas would be appreciated. Bless us all with better breathing.
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1 Reaction@spider109
I could be wrong but I think most people like the Pari e rapid because it goes so fast and is quiet and is as effective as ones that take more time. But do they actually find it more effective? Would be interesting to know.
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2 Reactions@bronchiectasaurus thanks for your update (and yay for your ride!) After two rounds of double pneumonia last Feb/March, a cracked rib from coughing and lower lobes collapsing because I couldn’t breathe deep (from the rib) pulmonologist had me start airway clearance 2x per day with levalbuteral then 3% saline then bevespi inhaler. Before that, Mayo pulm THOUGHT I had MAC based on CT but 2 broncoscopies were negative growing anything. She told me I’d cough up a more when starting nebbing saline but it would get to a point where I don’t cough up much. Bronc and sputum were positive for MAC in May last year (maybe because they’d finally grown enough during the bouts of pneumonia?). Started 7% saline after that (still levalbuteral first, saline, Bevespi) and pulm was right… by Aug. I was hardly coughing up anything other than clear. I continued 2x per day until a negative sputum in Oct. Backed down to 1x per day. Made it through the flu/germs that went around school without getting sick. That was a first! Why I wasn’t nebbing with saline 30 years ago I don’t know! Would have saved me the yearly bouts of nasty bronchitis/pneumonia that have left lungs scarred!
But, these past few weeks (in FL) allergies have been awful! I have noticed a difference and am back to 2x per day. I do think the nebbing saline has kept my lungs clear so the germs can’t grow. Pulm said the idea is no mucous in lungs so MAC (or other germs) has nothing to stick to and grow. So maybe the trick is during allergy season we increase to clear out the pollen! I do feel so much better when I neb 2x per day! I hook my Aerobika to my neb cup so I do them at same time. That does save a bit of time but will look into the eRapid neb also.
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2 Reactions@susanocl I have the same issue with allergy season - moving between Texas and Minnesota, I get a double dose. Today my patio table is yellow with mesquite, acacia and huisache pollens. When I get to Minnesota in May, it will be pine and birch pollens.
Something that helps me during allergy season is to vigorously manage the allergies. With pollen, I use daily fluticasone nasal spray plus twice daily azalastine (Astepro) spray, in addition to normal airway clearance (this was recommended by my pulmonology team.) In addition, we use HEPA air filters indoors, and I add a daily antihistamine tablet during high-pollen weeks/months.
Do you use anything to minimze pollen impact in your nasal passages?
@bronchiectasaurus
THANK YOU,
JEAN LOTZ
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1 Reaction@susanocl
I have had the same issues with pollen, rib displaced, sore muscles from coughing making it difficult to clear airways (pain from coughing). I am masking when I go outside, and walking inside on a treadmill until the pollen subsides. Would like to talk further if interested.