Saline Solution Vital to Health: Medicare Negates

@rmason Thanks for your info.
Are you still going to Tyler? Who are you seeing? I was only able to see Dr. McShane three times before she left. I understand from Carolyn in the administrative area that Shonna, a nurse in the pulmonary dept. who I had not heard of before, has much experience with our BE. I have to travel from OKC to Tyler.
Nurse Tracy has been so good with answering my messages and Shonna did recently also, with a quick response.
Barbara

I was traveling from SW MO, so after Dr McShane left, I decided to try somewhere closer. I have been diagnosed 8 years, but besides a clearing throat and occasional coughing, I have no other issues. (Only got diagnosed when I coughed up blood unexpectedly)
I am going to Wash U in St Louis-they are no Dr, McShane!

@rmason Interesting...... linda1134 above has an Advantage Plan and did not to pay anything. I wonder if her built in drug plan, within the Advantage Plan, is making the difference between your plan and her plan...one paying fully and the other having a charge.????

It would be hard in most local areas of the country to find a Dr. McShane who is so determined in her understanding and research with BE.

I have a low load of MAI and she was not happy with me for not letting her treat me....meaning wanting me to start the Big 2 . She asked: "You come to me, why won't you let me treat you." Well I think my decision has been O.K.... I have always felt fine even after finding out at NJH that I had a low load of MAI. They put me on watchful waiting and that is what I continue with till this day. I recently have had 2 sputum tests indicating there is no bacteria showing in the cultures. So hoping that holds true for quite a while for me.

I believe if you truly know yourself and you know you are a determined person...sometimes we have to do what we feel is best and right for ourselves. I also had help from a couple of the gals on this blog who guided me somewhat with that decision to continue watchful waiting.
Barbara

Yes, I think you are making a good decision. If I could go back in time, I would not have taken the Big 3. I only tolerated 2, but took them for a year with nothing to show but a probable messed up gut micro biome! The infectious disease doc in my hometown started me on it before I had “done my research” and found this group.
I am thankful I learned about lung clearance because I never would have known about that from local physicians- my infectious disease doc here advised me to take steamy showers to loosen the mucus! By that time I had done some research and corrected that advice!
The program at Wash U seemed surprised when I proactively brought a sputum sample- they seem OK with 1-2 per year.
I’m hoping researchers like Dr McShane will continue to educate her peers and there will be better and better protocols and treatments.

@rmason
All info is dittoed by me. Saline and nebbing necessary. Steamy showers not good.
I am able to avoid colds etc from getting a hold of me with daily nasal lavage and twice a day nebulizing albuterol and 7% saline.
I feel very fortunate.
Good luck to all!
Ann

@sueinmn
Just saw this and am jealous of why you only need 5-10? What is your secret?

@cdward1028 With stable bronchiectasis, controlled asthma and no infections, I do airway clearance most days with just my inhaler and exercise to move the mucus. This plan, approved by mu pulmonologists, works well unless I get an asthma or allergy attack or a respiratory illness. I neb the saline occasionally just to be sure everything is nice and clearn or after exposure to allergens or sick people.

Yeah! I’m brand new to all this and so glad to find and join this forum, I’ll have loads of questions and going to learn a lot here I can see that.
But on this subject— yeah. Why? I can’t believe how much the salt water for the nebulize costs.
Doesn’t it make you want to just boil your own? Not that I’ve done that but …

@grammyvictoria This is a great question..."Doesn’t it make you want to just boil your own?"
The quick answer is Maybe. There are already so many "must dos" with bronchiectasis and airway clearance, this is an added burden. For those still working, caregiving or other wise very busy and active, it might just be one thing too much - I know it would be for me!

Here are a few things to consider before deciding to do it -
-Only you know how precisely you can measure to get the exact concentration needed, and once made, the exact amount needed for each neb session.
-The water used must be sterile, preferably distilled then boiled, the salt must be pure, and you need a plan to remove any undissolved solids before bottling.
-Once made, the solution must be stored in a sterilized container in the refrigerator, and care must be taken not to contaminate it when opening to pour out the next dose. (No dipping into it with a syringe to extract a dose.)

Even when not covered by insurance, I factor the cost into my medical expenses, much like prescription copays and over the counter medications. My (independent) pharmacist has a few discount plans they check every time I order and gives me the best available price. The most I have ever paid that way was about $15 for 60 vials, or twenty-five cents each.

Can you see yourself doing the measuring/boiling/bottling every two weeks? Both my pharmacist and the pulmonologist's respiratory therapist told me that would be the safe shelf-life of the homemade solution.

@sueinmn
Holy cow I’d be happy with $15. I’m paying 47$ and change! And that’s with insurance. Without, it would be over $70
But you’re right, I can’t see myself taking all those steps— not at all. Being new at this, I’m even impatient with the time it takes to sterilize things— the neb and the aerobica and the procedures themselves.