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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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I watched it this morning. I learned so much!!
Please see let me know what you find out about an adjustable bed. I'm pretty sure that my wedge pillow with an enormous firm pillow on top is high enough. I used to sleep on my left side but that's impossible with my pillow arrangement so I sleep on my back. I would, however, consider an adjustable bed but there are so many out there!
I will let you know. I was overwhelmed looking at all the different companies online. Will go to a couple of places that sell beds and mattresses.
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1 ReactionAnother option would be to get a mattress elevator that goes under your existing mattress. It will give your sleeping surface a gradual decline. Check out this one on Amazon. https://www.amazon.com/dp/B07R8GLK6B/
Interesting, but Dr Huitt said that our shoulders to hips should be elevated around 45% and it doesn't look like that would do it. Also being able to also lift the feet would help somewhat to prevent sliding down.
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1 Reaction@rits They do have one that is 7" at the head vs 5" Still not 45 degrees though. My GI doc once told me all you really need to prevent reflux is 2-3" elevation. Bill
Thank you for sendng the link. I looked at it, and it appears to elevate the HOB about the same degree as mine is now with 6" blocks under the frame at the head of bed. I believe that an adjustable bed will be best for me due to GERD and back problems. So great that we have this site to share info.
Hello - this is Pam who has been writing on and off recently about my pseudemonas and how best to deal with it. Since early September I have had pseudemonas, again, after having it twice before and treated successfully with Levaquin. This time I will not take Levaquin as it has caused neuropathy in my feet and toes. My lung doctor has given me two choices. This is what he wrote to me this morning:
"I think that an attempt at suppressing the pseudomonas germ is the next step, with an antibiotic regimen taken one month on and one month off.
Two options that we can try for:
1) Aztreonam (Cayston) nebulized 3 times daily; or
2) Tobramycin not in nebulizer but by podhaler, 4 capsules twice daily." Has anyone out there done either one of these? Do you have any first hand experience with using either approach that might help me decide which way to go? Many thanks, Pam in Sudbury, MA
I used Tobramycin in a nebulizer, it was supplied in ampules like my saline and levalbuterol. After 2 cycles, my pseudo was gone and has not come back in 3 years. Has the doctor explained why he is recommending the "podhaler" instead of the liquid?
Sue
My wedge pillow is 7 inches at it's highest.