← Return to Nebulizer and saline treatment with daily exercise

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@blm1007blm1007

Sue- Thank you for such a quick response.

At National Jewish the majority of the tests indicated overall, except for the Bronchiectasis, I am healthy. Small Hiatal Hernia also. Appprently not Acid Reflux indicated. Sputum test came back 3 out of 5 showed a low level of MAC and Dr. L indicated it was not necessary for me to be put on an anti-biotic at this time due to such a low count. Some demonstration of airway clearance teaching in that whirlwind week, however, aerobika/aeroeclpse, prescription for nebulizer and vest (waiting for Medicare approval before the vest is permanent...on loan (so to speak) until then. All aforementioned devices with a written plan prescribed and arranged by NJH due to my visit to NJH and help from and during my NJH visit. . Overall my experience at NJH was very good, much needed etc. and I am very glad I went. The hardest thing for me to comprehend was the huff cough and I finally found a good YouTube demonstration of it and having been doing it, more so, the last few days. My sputum is constant. For some reason chewing a tiny piece of a stick of gum helps to allow me to not have to focus on the feeling of a"lump in my throat" and need to constant clear....a bit of relief. The gum was my idea, just hope I am not doing wrong by myself with it???? I try not to have more than a stick a day.

Yes, I figured that out about specialists/pulmonologists as far as their full understanding of BE and the when and how to treat a patient best in the big picture of things. I was on the internet for nearly two years trying to find out what was going on with my health. I also on my own called and went to different specialists in hopes of finding an answer as to why the substance from my system and the feeling of a "lump in the throat." Finally my primary doctor in August of 2022 did the C-Scan due to the final straw of the amount of weight loss over that period of time.

Yes, with now knowing more about BE I have tried very hard not to work in the yard and soil. Yes, when available, I have help with the soil in the shrub/flower beds. No mowing for years. Lucky me. Yes, trying hard to get into the practice of wearing a mask when outside and involved with anything associated with yardwork/landscape....and do try to remember the gloves. OK.....washing the clothes....that could be a daily chore considering all and how I like to keep the shrubs and flower beds. I realize one must adjust and understand that life with BE changes and one must change and alter many things....which I am doing and will. BE pretty much takes over your life in terms of time needed to dedicate to what you need to do and also limits one's social life, more so due to the constant sputum.

I am buying and drinking bottled alkaline water. O.K., need to not drink a glass of water brought out by the wait person when I take myself out to eat.

I boil the tap water for 10 minutes to clean daily the aerobika and aeroeclipse in warm water. Do you think that is good enough for the daily cleaning. Some information from Monaghen and NJH about disinfecting the aeroeclipse differs, confusing. What do you think? do? Demineralizing with Vinegar for both and rinsing with each process with distilled water? What do you think? do? How long must the compressor run to clear out anything in the tube line after nebulizing?

I turned up my hot water heater temperature after reading yesterday about water temperature.

Thank you and others for all the information posted. It is very helpful let alone knowing you are not alone in this life changing health problem.

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Replies to "Sue- Thank you for such a quick response. At National Jewish the majority of the tests..."

Wow - you are on a learning curve.
The vest - I know NJH is "sold" on them, but you will hear a lot of different opinions here. My recommendation is to try it and see if it helps you - every one of us is different!

Gardening - I actually leave my clothes in the attached garage, run in and shower. I will re-wear them for a day or two, just don't bring them into the house to avoid carrying any unwanted stuff in. We are also a no shoes household - all outdoor footwear stays by the door, or even in the garage. Our shoes are actually stored in the entry closet, except for a few dress shoes and slippers. We started both habits years ago when we had a couple of kids with lots of allergy and asthma problems.

Nebulizer tubing - I only dry until no visible moisture - 30 seconds to two minutes is plenty.
As for the aeroeclipse, I bow to others expertise. I don't use it - I use the cheapest simple nebs I can find because I don't like messing with the fiddly bits due to tremors.
As for cleaning and disinfection, recommendations abound, I wash my neb and Aerobika daily in soap and tap water, boil weekly for 15 minutes in a saucepan in tap water. Has served me well for going on six years, and I have not gotten reinfected with MAC or Pseudomonas. I don't have hard water so no need to demineralize, and I don't use distilled water.

You said, "...I realize one must adjust and understand that life with BE changes and one must change and alter many things….which I am doing and will. BE pretty much takes over your life in terms of time needed to dedicate to what you need to do and also limits one's social life, more so due to the constant sputum..."

I live with the philosophy that one does the most necessary things to safeguard health, and let fate take its course. For me that means control my asthma, do airway clearance, manage chronic pain, avoid sick people, mask when necessary, eat well, rest well, and exercise.

Beyond that, I am probably not a "Poster Child" for safe living with Bronchiectasis. I garden volunteer (even at my grandson's school), eat out, travel, go to church, gather with family and friends. go dancing with my husband... It took me 5 years to work out what is "safe enough" and what is "too risky"... for me. And when to mask and when not.

Each person must decide what level of risk works for them. In my case, as an extrovert, an active person, and a people person, isolating myself to live longer doesn't work.

Have you thought about what things you really want to continue doing, and what you are willing to let go?
Sue

Hello, I have a question regarding your NJH visit. Did they get the approvals for the scheduled tests there from your insurance or it was your responsibility? I wonder how it works.
thank you