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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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I am pretty sure that my short fat tube would melt if I put it in boiling water. My infectious Disease Dr told me to soak it in hot water with Dawn Dishwashing detergent for 30 minutes then rinse. That's what I do. The blue stuff.
Nope. They take out $177.00 per month of out of my social security check and send me the rest. Been doing this for the last 3 years. State of Georgia told me to put away my Medicare Federal card and never give it to the Dr's or hospital. I sign up with the retiree State of GA website every year and pick my plan. I always choose the PPO plan either United or Anthem Blue Cross plan. They are usually the same coverage but one had a co-pay and the other did not. This year I had to switch from United which I have always had to Anthem. State Of Georgia funded BCBS this year and not United. United would have gone to $80.00 per month out of pension plus the $177.00 to Medicare. I went with the cheaper plan. So far so good. Just ordered Tobraymicin for $66.00 from the Speciality Pharmacy in PA.
Oops, my bad, not the tube part.
sad. And now things will get worse with everything medical. Just wait. I expect to die during this govt takeover. All hope of finding a cure for pseudomonas is lost at this point.
NO
From what I understand with the regular Medicare system you pick a plan. There was a discussion on a group about Medicare Advantage Plans not paying and denying coverage for certain things. It must be cheaper, I have no clue. Maybe you should check into other plans. Somebody who used Medicare said they picked Group G and it was fantastic. All I know about the Federal Medicare system is what I see on TV ads. My SHBP Medicare program pays for all of my drugs. Never been denied coverage. Now I might have to jump threw a few hoops to get what I need but it has always worked out.
I would consider asking your ID doctor for a pulmonologist recommendation. One he/she has worked with who has a good reputation. You deserve a provider who is engaged in your well being. It sounds like your pulmonary provider was not looking at the whole picture. Trust your gut. Best of luck to you. I am sending good thoughts and prayers.
My ID Dr. recommended this guy. He seemed ok at first but he really messed up with this surgery thing and now I don’t qualify. I have been beyond crushed since this news of two weeks ago and now feel like I’m slowly dying. I have an appt coming up with my ID Dr. in March because he wants to see if adding the Ethambutol is helping. Sure hope it is but……I’m just so sad…..I hate this. It’s been 4 long years already. How I long to again have a conversation with someone without coughing and/or explaining I’m not contagious it’s just an ongoing lung problem. Maybe I’m just being a big baby but I’m so done with this.
You are NOT a big baby! It is perfectly understandable how you could feel frustrated and without a life raft. I know how it feels to be so afraid to be anywhere due to uncontrollable coughing fits. Is there a possibility for you to enlist the help of a patient advocate at your healthcare facility? If so, explain to them your situation and your exclusion from the care you desperately need as well as your declining quality of life, both mentally and physically. My heart goes out to you. Please do not give up the fight. I know it is hard but don't give up.
Thank you so much for your kind words! Exactly what I needed..I have a beautiful 46 year old son, would love to help, IF I simply made my needs known. His wife is amazing too. I’ve decided to talk to them and include them in this “journey.” I guess I just didn’t want to bother anybody (once a mom) but I need to get over that. Sooooo glad you brought that to my attention. Your priceless - feel so much better already - I have hope…
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