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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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@bronchiectasaurus Curious how you are able to get a prescription for hypertonic saline. Maybe you purchase over the counter. It saddens me that people are out there having to fend for themselves in managing BE but I understand. For a long while I was the one educating my pulmonary team as they did not see much BE in their practice.
@sueinmn
I bot guaifenesin 400 mg by smart way, but haven't taken it yet. I did have a Dr tell me about Mucinex, but didn't like all the ing. so bot this. my ques: is 400mg about what you took?
another ques. I have brownish globs of mucus right after or during eating come up. never used to get this, only on occasion. anyone else have or know why?
@scoop I can get hypertonic saline, and many nebulizers and compressors, without a prescription. But I did need a prescription for the Pari eRapid! For that I asked the pulmonary specialist I was assigned. It took a few weeks due to clerical snafus but I eventually got it.
I have to pay for all my lung stuff out of pocket but at least I could get an Rx from my health system.
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1 Reaction@akron3 Actually, my preference is 600mg long-acting Mucinex so it is only taken twice a day. Many years ago I used the generic version, but settled on this for consistency and convenience.
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1 Reaction@bronchiectasaurus
I think most of us, regardless of having insurance of some sort, have to pay out of pocket for our "lung stuff" because only the cheap stuff is covered and we really need better nebulizers etc to do us any good.
Have you checked to see if there is a Bronchiectasis/NTM specialist in a larger metropolitan area that is not too far out of travel distance for you? It would be worth your time even if you have to drive farther than your immediate locale.
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1 ReactionI was diagnosed with MAC disease which caused my Bronchiectasis. I searched desperately in Tucson AZ for a doctor to treat my infection but they all turned me away. It seemed they did not want to have anything to do with MAC. I felt abandoned by the medical community until I made contact with the Mayo Clinic where I was accepted for treatment. I am going through a set of antibiotics and I hope one of them will kill that bacteria. Was researching how prevalent MAC is in the United States and I found MAC is very much prevalent around the United States including Hawaii. No MAC has been found in States like Montana and Alaska. I wonder, if it is so prevalent why they don't do anything about it. The bacteria is in the soil, dust including house dust, and water. Very prevalent in public pools and spas. A compromised immune system makes easy for MAC to attack. So much education is provided and research about all the infectious diseases except nothing about MAC.
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2 Reactions@bronchiectasaurus if it’s any consolation, I also pay out-of-pocket for my hypertonic saline and every single nebulizer.
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1 Reaction@heidemarie1 You are right, MAC/NTM is everywhere just like many other infectious organisms. The big difference is that it only causes illness in very few of us - the estimates vary from 1 to 3 per thousand people, compared to millions who get things like Influenza and pneumonia.
The good news is that NTM and Bronchiectasis are getting a closer look thanks to organizations like Mayo, National Jewish Health (NJH) and ntmir.org.
Here is a good place to find reference materials and information about MAC:
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/
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2 ReactionsRead the Southeast has a higher rate of MAC possibly due to heat and humidity.
@dho75 Let's keep in mind that a "high incidence" of MAC is relative. It's not anything like 10-20 times more likely - just a tiny increment.