Nebulizer and saline treatment with daily exercise

Welcome to Mayo Connect. You will learn so much from our helpful group!

What did you learn during and after your visit the NJH? Were you able to get any education on airway clearance while your were there? And have you gotten any results from your sputum cultures yet?

Many of us have learned more from the group here than their local pulmonologist - as a rare disease, even many specialists don't see it very often. Have you looked for a local specialist with expertise in Bronchiectasis?

You asked about gardening - yes, I still do it - but I wet down any soil to minimize airborne dust, pay someone else to handle heavy digging and spreading mulch. And when I am going to be in close contact, I mask & glove, shower and wash my garden clothes when I go in.

As for shower/water - my water tested MAC free several years ago, we keep water heater above 130F, and I just don't worry about it. Other people may be more cautious than me. I do drink bottled spring water when not at home.

Feel free to read many of the ongoing discussions, and ask questions of all our members, you will fine everyone willing to help.
Sue

1

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.

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

VEST: I am not totally comfortable with the vest due to having the hiatal hernia and concerned of knowing if it affects other organs (heart) with all the vibrations. Giving me thought to it before I go back on since I am waiting for something more for it from Hill Rom. I can underststand the different thoughts about it.
GARDENING/CLOTHING: Oh, OK leave in area of garage or on the clothes line to air out and use another time or two. Thanks.
SHOES: I have tried on different times long before my diagnosis to do as you do. Must now for sure. Going to get a storage tub for them, maybe that might work at the door.
SIMPLEST/CHEAPEST NEBS: What is/are they that you are referring to.
THANK YOU. This communication with you is so looked forward to, I thank you.
DISINFECTING: I have the OMBRA with Aerobika and Aeroeclipse. NJH recommendation. Sometimes I think suggestions are possibly overkill with regard to how to care for the products.????? So boiling water doesn't melt the plastic.????? I hate having to use plastic. Do you put something between the bottom of the pan and the Aerobika as suggested so it doesn't touch the pan the water was boiled in??????? I boil tab water daily for ten minutes to clean it in liquid soap detergent. Glad to hear you use TabWater...in terms of the big picture and for disinfecting. I will be using the distilled water to rinse each time, I don't have soft water...one can see the calcium residue in the pan.
ASTHMA/BRONCHIECTASIS: Is it just asthma that you have or also bronchiectasis?
FIGURING IT OUT: Yes, I realize it takes time to figure out scheduling for ones health requirements, safety precautions and yet not overall and allow oneself to enjoy life also. I have constant clearing of the throat, mucus, and especially after eating....DO YOU???? This after eating is what is the hardest in terms of social life and meals out....alone or with friends. Any marvelous suggestions??????
ISOLATION: Do not want that and am doing my best to figure out all so that does not become my life. I learned about being a prisoner in your own home when I was involed with an elderly aunt who lived alone. I live alone. I promised myself not to allow that to happen to me.
CONTINUE DOING AND ABLE TO LET GO OF: Figuring that out now, also. I love to cook and eat, garden in the yard etc. etc. and dine out in 'good food' restaurants. Again, working on all that.
DAILY ROUTINE/VITAMINS: My life has been 90% of eating healthy and taking vitamins....that from childhood at home. I am taking D, zinc, C, Probiotic, Multi and other supplements. Going to also begin to take alfalfa. Are there specific vitamins that you suggest?????
i am walking (in the house) most all day long and specifically walking 15 minutes before the Nebulizer each morning as well as having water PH water before Nebulizer.
NAC: What brand, dosage etc. etc.????? I read about it months ago and wondered what to do. NJH did not suggest it. Do you take Muscinx liquid or tablet?????
THANK YOU: This communication with you is wonderful and I look forward to it. Thank you for the time you spend communicating.

lora jo: I have been diagnosed with both Bronchiectasis and MAC and have been on the Big 3 (3 days a week) for about 5 months. I walk several days a week a brisk mile (should do more), and that's when I feel best - moving and in outside air. I take turmeric in water, and various vitamins. Apart from intestinal issues, I don't seem to have many other symptoms, but I do worry about the possible risks to my eyesight, hearing, and heart and I'd like to quit the antibiotics. I've been told that once the eyesight is damaged, it's not reversible. But one worry is that even if I have negative tests and eventual quitting, the bronchiectasis remains and can breed more bacteria. Is that a concern for anyone else? Also, how do you arrange to have a sputum sample sent to National Jewish Health for a colony count? That sounds promising.

I would like to know if that is possible also. I would think that one would have to be a patient at NJH in order to do that, but I don't know. Also, it seems if they take "outside" samples they would stay busy 24 / 7 doing nothing but testing outside samples with all the MAC disease that is out there!

Hi Sue, where did you have your water tested for MAC? Is there a special place where you had to send it? Thank you

not @sueinmn but two water testing places that have been mentioned in this forum are:
https://specialpathogenslab.com
https://mytapscore.com/products/mycobacterium-water-test
Likely there are more testing places. Perhaps start with your local municipality for suggestions. Be prepared for them to be confused! They think chlorine kills everything.

Some people believe water testing is ineffective because water delivery to your home is a dynamic rather than static process. What might test negative one day, the next might be positive. On the other hand, if testing provides peace of mind then perhaps it's worth doing.

This thread has officially gone far afield and off topic!

It was 5 years ago and the company no longer advertises. As I recall it was about $150. @scoop posted two current places for testing earlier today. You need to Google foe a lab that tests specifically for Mycobacteria or NTM
Sus

Thank you.