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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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Changing docs can be a challenge - I just had to switch my primary provider after over 20 years, now I found out my audiologist is gone too.
What steps have you taken to find new docs? Are you in an area with a lot of health care options?
Sue
I will update. I am not sure what my plan is yet
I have been given three different types of nebulizing medication. I also have a vest. None of them seem to help. I was diagnosed with bronchiectasis three years ago. I have a cough that just will not stop. I find it is worse when the humidity is high. I do not cough up a lot of mucus. Even after using the nebulizer and vest. I am taking azithromycin every day. I usually have a exacerbation around Oct and March. Sometimes in between. I am tired and worn out. My cough has caused intercostal strains and muscle pulls. I get coughing so hard I cannot breathe. I can't use an inhaler because I can't get any air in. I use my husband's cpap for forced air. The coughing is daily. I have asthma as well and after Covid I had pulmonary fibrosis which is pretty well cleared. Bronchiectasis is in both lungs. I see a pulmonologist, who has me on a annual visitation. I can't even get to see him when I am sick. I know this is long and I apologize but I am frustrated. I cannot find any relief. Open to any suggestions. Thanks
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2 ReactionsIf you can swing going to National Jewish Health in Denver…they will steer you right.
I’m going next month and everyone says it’s THE best place around to get to the bottom of things. I hope you can go there.
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1 Reaction7% saline is something I learned from you. Brought it up to my lung specialist at Cedars and now she wants me using it everyday. Powerful stuff and seems a bit more effective than this very expensive Arykayce that I'm also using everyday!
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2 ReactionsWould love to know how you make out. My insurance will not pay for a trip out of state.
If u don’t have much money u may qualify for financial assistance. Talk to Marquette or erma in finance there.
I downloaded an App called Autogenic Drainage. I learned the hard way that I MUST use it every night before bed to get upas much mucus as possible. Then when I go to bed I do t cough.
Hi Healthybon,
I know you are a patient of Dr. Swenson as I am. I think he is very good but you are also seeking help at National Jewish. Can you tell me why you think the extra care there is necessary?
Mary Jane Childs
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1 ReactionVickie, call national jewish and when they call you back they ask what insurance you have. Unlike Mayo Clinic NJH accepts most of the insurance- all Medicare and most Medicare advantage. They will let you know. I also called my insurance( I have Aetna Medicare advantage ppo)and asked them if they have contract with NJH. Now after a 5 day visit I get bills but they are priced by Medicare. So do it and don’t be afraif