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.