Nebulizer and saline treatment with daily exercise

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.

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

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

Sue- I may have posted this the other day incorrectly so reposting it in hopes this is done correctly.
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.

Thanks for the info. Sorry to hear the alternative route did not work but happy to hear you tolerated the meds. I wish you the best and continued negative sputum samples. I am so thankful for this group. It’s good to be able to talk to others with this disease that most people(and many Drs) have no clue about!

Let me try to answer you in an orderly fashion here...I may have missed your post in the craziness of the holidays - we are only home for 2 weeks, trying to fit everything in, before we head back to our winter place.
NEBS: I replace my neb cups every 2-3 months, usually have 2 in rotation. I have learned here to replace the tubing at the same time. (I usually only neb once a day now.) Here is the one I am using now - I buy 5 at a a time:
https://justnebulizers.com/collections/nebulizer-sets/products/truneb-reusable-sidestream-nebulizer
DISINFECTING: I have a round silicon trivet that fits in the bottom of the saucepan to protect the parts from getting too hot.
ASTHMA/BRONCHIECTASIS: I have both, although the asthma causes me more day-to-day issues with my breathing.
FIGURING IT OUT: Throat clearing & mucus are always an issue. Mine is minimized by: keeping allergies controlled (will not share a recommendation - everyone is different in this respect) and using guaifenesin generic (Mucinex) 600mg long-acting tablets and NAC 600mg(?) twice a day. I currently use the NOW Brand of NAC and have found it reliable. For Guaifenesin or Mucinex, be sure to get it without a decongestant or any other ingredients.
DAILY ROUTINE/VITAMINS: I am a minimalist - I take a calcium/magnesium/zinc supplement. If I am "up North" in the winter, I take a low dose of Vitamin D. I take an Omega-3 supplement to try to protect my heart - long family history. I take Vitamin C & Zinc if I am fighting a respiratory "bug." That's it! No other stuff - my vitamin and mineral levels are tested every couple years by my primary, and are all normal. With a daily multi-vitamin, several were way too high, including 2 B vitamins, so I stopped - haven't noticed any difference. I am vaccinated against everything possible - crucial to me because of my next point.
CONTINUE DOING: Isolation is brutal for me. This holiday season I made it through 2 airports & a flight (masked) two family outings, 3 restaurant meals, church, a little off-peak shopping and numerous family/friend gatherings and so far am healthy. Three years ago, I never thought that could happen again! I do have to say my family - immediate and extended, have always been meticulous about staying home when ill, and notifying others if they get sick right after a gathering. Our close friends are the same way.

I appreciate your thanks. My writing is my way of giving back to this group, who helped me immeasurably when I was diagnosed over 5 years ago, and as I endured treatment for both MAC and Pseudomonas.
Sue

Sue, I was diagnosed about a year ago for MAC and avoided treatment. I am now ready, but I am really scared. I live in the Asheville NC area. I have been researching. I did have a CT scan that indicates no visible damage in lungs. But I have some fatigue and persistent cough.

What do you recommend, besides the Big # antibiotics?

NAC inhalers?

Let me try to answer you in an orderly fashion here...I may have missed your post in the craziness of the holidays - we are only home for 2 weeks, trying to fit everything in, before we head back to our winter place.
NEBS: I replace my neb cups every 2-3 months, usually have 2 in rotation. I have learned here to replace the tubing at the same time. (I usually only neb once a day now.) Here is the one I am using now - I buy 5 at a a time:
https://justnebulizers.com/collections/nebulizer-sets/products/truneb-reusable-sidestream-nebulizer
DISINFECTING: I have a round silicon trivet that fits in the bottom of the saucepan to protect the parts from getting too hot.
ASTHMA/BRONCHIECTASIS: I have both, although the asthma causes me more day-to-day issues with my breathing.
FIGURING IT OUT: Throat clearing & mucus are always an issue. Mine is minimized by: keeping allergies controlled (will not share a recommendation - everyone is different in this respect) and using guaifenesin generic (Mucinex) 600mg long-acting tablets and NAC 600mg(?) twice a day. I currently use the NOW Brand of NAC and have found it reliable. For Guaifenesin or Mucinex, be sure to get it without a decongestant or any other ingredients.
DAILY ROUTINE/VITAMINS: I am a minimalist - I take a calcium/magnesium/zinc supplement. If I am "up North" in the winter, I take a low dose of Vitamin D. I take an Omega-3 supplement to try to protect my heart - long family history. I take Vitamin C & Zinc if I am fighting a respiratory "bug." That's it! No other stuff - my vitamin and mineral levels are tested every couple years by my primary, and are all normal. With a daily multi-vitamin, several were way too high, including 2 B vitamins, so I stopped - haven't noticed any difference. I am vaccinated against everything possible - crucial to me because of my next point.
CONTINUE DOING: Isolation is brutal for me. This holiday season I made it through 2 airports & a flight (masked) two family outings, 3 restaurant meals, church, a little off-peak shopping and numerous family/friend gatherings and so far am healthy. Three years ago, I never thought that could happen again! I do have to say my family - immediate and extended, have always been meticulous about staying home when ill, and notifying others if they get sick right after a gathering. Our close friends are the same way.

I appreciate your thanks. My writing is my way of giving back to this group, who helped me immeasurably when I was diagnosed over 5 years ago, and as I endured treatment for both MAC and Pseudomonas.
Sue