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7% Saline Success Story that warmed my heart.
Last year, I met a woman at our winter church who has had MAI (MAC) and Bronchiectasis for years, and had a horrible chronic cough. When she heard that #1 I knew what it was, and #2 I was on Mayo Connect, she started asking questions.
Over many conversations and text messages I convinced her to give 7% saline and airway clearance a try. Her doctor here never heard of it, so her husband ordered it on Amazon & she started using it daily.
Yesterday, she was waiting by my usual pew when I arrived at church and said to me, "I need to hug you. You saved my life!" She went on to explain she convinced her pulmonologist back home to order it, got Medicare to pay for it, and used it twice a day for months. By Fall, she was down to 5 times a week, and now she uses it twice a week (but daily airway clearance.)
Here was her story - in 2022 she was on antibiotics and/or steroids 19 times. She coughed a lot during the day, all night long, and whenever she tried to exert herself.
In 2023, she had ZERO exacerbations requiring antibiotics or steroids. She coughs far less (they used incense in our service, I was hacking up a lung, and she only coughed once or twice.) Her lung function improved 12% between her Spring appointment and December. She has been able to regain a little weight.
This is a lot like my experience with 7% saline and rigorous daily airway clearance. I made it through 2023 with one exacerbation that required steroids, no antibiotics. My lung function has held steady for 4 years using only airway clearance & saline. In my case I also use oral NAC and Mucinex because I have very "sticky" mucus and it helps keep it thin enough to expel.
Has anyone else managed to "ditch the Big 3" by using airway clearance and saline?
Sue
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My CT scan wasn’t a pretty picture but it’s much better now:)
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1 ReactionHi Sue - I am a bit confused.
We are to be careful diet wise regarding salt......as well as sugar and fat.
Saline is salt....and we are breathing it in.
So, wouldn't that cause problems....like edema etc. etc.?
My feet are swelling and when doing the nebulizer my feet, and hands as well, become very cold. I have decided to use a glove to hold the nebulizer.
I did see that the Pari, that you have mentioned, has a handle which might make a difference. I have the AeroElcipse with the Aerobika.
Any thoughts?
Yes, there is a tradeoff. Each vial of 7% saline contains about 280 MG of sodium or 12% of your recommended daily intake. If it is affecting your blood pressure adversely, you may need to adjust your diet.
I can tell you that part of it stays in your lungs , I don't know how much is absorbed into the blood. I can also tell you that I prefer that small risk to all the risks and side effects of continuous antibiotics.
I also have no advice regarding cold hands and feet, having never experienced it.
Have you ever checked to see if the saline nebs are raising your blood pressure?
Sue
Sue, me again can I ask what is your daily dose of Mucinex consist of? A.M & P.M.
600mg long-acting guaifenesin-only formula twice a day. If I have extra congestion, I increase (double) EITHER my NAC or guaifenesin in the morning only for a few days.
Sue
Thank-you. I use the 600mg Mucinex also in a.m only though and no NAC I take liquid Guaifenison 200-400mg in evening.
Is it still considered airway clearance when you nebulize and use the flutter valve and huff cough but don’t cough up anything?
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1 ReactionYour doc seemed kind of "quick on the draw" to put you on the Big 3 from what you indicated. There are guidelines for which patients should be considered for the treatment. Will this be your first CT scan? What shows on your CT scan is a big part of the consideration for treatment as well as your symptoms, etc.
Thought so Sue.
I also started taking a small amount....( 5ml ) of the liquid guaifenesin once in the morning and evening.
I have always had muscle pain in my lower back after starting any medication that has sodium listed. No back problem as yet just the feet showing edema.
I have been more conscious in the last few days of salt intake and can see and feel a positive difference in my feet.
Yes, tradeoffs. I hardly ever did much salty snacks until recently. So I will have to forgo my favorite Aldi Norwegian Crisp Grain cracker and anything else with salt that I consider a cheat treat. Giving up the salty treats won't be hard to do.
Blood pressure taken on Wednesday at medical office last week....not raised....distolic number 2 points lower than my normal. It was 100/58. I have always been low normal but rare to go to 58 on the distolic. I will need to watch my blood pressure. That could also have something to do with hands/feet being cold, I believe. Not sure why it was lower however overall I feel fine.
At 81 and 90% of NJH medical tests indicating healthy, as well as the recent (Tyler) C Scan not showing sinus problems, I am very fortunate to not to have had a chronic illness until the diagnosis of BE in 2022.
So ,hopefully ,,,,,,,with having walked this earth this long in this body .... not too much more begins to happen health wise, for now.
P.S. Does a reply always go to a persons e-mail. Which I like.
OR.....is there something special one has to do to also post to a person's email.
THANKS SUE.
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1 ReactionMy doc told me if you try everything and nothing comes out, that usually means there is not enough there to come out. The trick is to not give up - at times, there may be a small amount.
For several days this week, I had no mucus come out, typically when healthy I see maybe a half teaspoon to teaspoon. Suddenly this morning, after my inhaler but before any clearance efforts, I started coughing, and brought up a lot (for me when healthy - more than an ounce of very thick, clear mucus.) It reminded me that with my house disrupted by remodeling, I was lax on my 7% saline nebs. I felt all cleared out after the coughing, and had no urge to cough after 90 minutes of dancing this afternoon, so I'll restart 7% saline tomorrow.
Sue
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