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MAC: Just how well do nebs work, anyway?
Good afternoon,
Like many of you, as I sit with my "pipe" in my mouth for seemingly endless hours, I often wonder "Does all of this do any good? How deeply is this penetrating into my lungs since most of my bronchiectasis is in the lower lobes?"
Let me tell you a little story about my past few weeks...
On Fathers' Day, I started coughing like BT (before treatment), my lungs hurt, no energy, ... I looked at my trusty green machine and realized it was lonely - I hadn't used it for a few days. So back to faithful daily use, and it helped a little, but the darn cough was getting to be 24/7, so off I went to the doc. She changed my neb (temporarily) to DuoNeb to try to open my lungs better, stopped saline to calm the irritation and ordered a few days of steroid too. Boy, the junk really started to come out!
Then I restarted the saline, and just like I remembered from my early use, every cough was like licking the salt off my Margarita glass. But the cough is 90% gone, my O2 sats are almost (my) normal, and the fatigue is almost gone. This morning I realized that yesterday's saline vial wasn't used, oops, it had fallen on the floor. Then I ran off to do errands & chores.
GROSS ALERT!
When I started to cough, I was STILL bringing up a ton of mucus (after 48 hours) and it still tasted like salt.
Since 7% saline has been shown to inhibit or stop the growth of MAC bacteria, I find that VERY happy news - it means that salty fluid stays down there, bathing our lungs, even if we occasionally forget or get lazy (not that I'm recommending that...)
Perhaps that's why those of us routinely using hypertonic saline are having fewer exacerbations, and why I didn't end up as sick as I have in the past.
What has your experience been?
Sue
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Well, bronchiectisis makes one more vulnerable to bacterium (re: pseudomonas, Mac). Because it allows them more time to flourish in your airways, as the motility mechanism in your bronchioles is impaired. I have read that pseudomonas is easily found in mulches and dirt. I was all set for chickens when I found out about my mycobacterium avium complex growth in my sputum cultures. So decided against them. I still garden a bit but wear an n95 mask to decrease risk of inhalation. I know this is a lot of information, but, part of my Mac also has to do with reflux from non diagnosed hiatal hernia. Bending over to weed is still a big part of my gardening, and it does irritate the sputum production problem! …but what’s a girl to do?
Oh I see. Thank you for clarifying that. I don't bend over much when I garden, but rather I bring everything I need to work in one area and then sit on the ground. I don't know if that would help with your reflux. I have only two chickens. When we first brought them home and had them in the kitchen for 2-3 weeks, that was really awful for my breathing. I felt I was almost allergic to them. But as soon as we moved them to the coop that went away and I find caring for them really improves my breathing as they get me out of the house on even the chilliest of days. I think it helps to have only 2 so I am able to clean their coop on a daily basis and it never gets very dirty or dusty. Interesting to keep all of this in mind though as I have been taking on more of the planting in the spring but maybe I will cut back on my interaction with loose dirt. Thank you!
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1 ReactionThanks for your story. My I ask, how often was your hemoptysis and how much each time and what was the color for over that 3 yrs period? You did not stop saline even If you experience hemoptysis?
I tried 3% saline this morning and evening one gave me a little bit bright blood so I had to stop right away.
Every time I cough up blood, I have to stop entire airway clearance for 5 days. It is really frustrated.
I have found that if I don't use a bronchodilator the 7% saline is much more irritating? Do you have a bronchodilator (albuterol or levalbuterol) that you can neb or use with and inhaler before your saline?
Yes, I have levalbuterol before saline. The problem for me is that I could not tolerate 3% saline. So disappointed.
Aah, gardening - my passion. When first diagnosed with Bronchiectasis, MAC and Pseudomonas, I was told never, no more by the doc. When I changed docs after a year and a half, both the new pulmonologist and I'D doc said gloves, N95 mask (with valve is ok) and change clothes and shower afterward. Also wet down potting soil before use and avoid peat mixes. And no chickens. Pretty sure the MAC came from the leavings of feral free range chickens in my Winter Texas yard, so I stay in while yardwork is being done out there, and only garden in pots.
Sue
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1 ReactionAfter years of using 7%, my lungs refused to allow me to continue. While they didn't bleed, they went into terrible shortness of breath and bronchospasms. I was able to tolerate 3% for a year or so but then the same thing happened. I am now nebulizing with .9%, normal saline. While it doesn't kill any bacteria, it does soak the sputum that the bacteria feast on and helps me get it out of my lungs. You might want to try it.
I hope you have a chance to watch Dr Huitt's ntmir webinair available now on YouTube. She is not against gardening only the bending over.
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1 ReactionThanks for the comments, I will try it and slowly and gradually increase % but may not try 3% for a long time.
I'm a kneeler, not a bender. I have intermittent vertigo, so bending is always an issue. I have a variety of kneeling pads and a kneeling bench with handles for propelling myself back to my feet.
Sue