Connect
Practical questions about nebulizer, shower head filters & gargling
This forum is so helpful and I thank all for their contributions. I have three questions:
1. Do we have to rinse the aerobika or nebulizer in distilled water after we soak in plain sudsy water or can we just rinse in regular water for our daily cleaning? I ask because lugging distilled water can be cumbersome and I would love to skip the use of distilled water if it is unnecessary.
2. For those who have put a filter(s) on their shower head so that showering can be the equivalent of bathing, please let us know specifically what filter or filters you installed and any other information that would be helpful for us to know.
3. Was anyone advised to gargle after using inhaled amikacin? If so, was any particular mouthwash recommended?
As always, thank you and wishing all a Merry Christmas and a Happy and Healthier New Year. Terry
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
Hang in there, you are in the right place. I am getting much help from this group and I’m encouraged.:)
-
Like -
Helpful -
Hug
2 Reactions@gardenernj Hello, and welcome to Connect. Do you have a first name that I can address you by? I am very glad that you are finding this site helpful. I am sorry about your diagnosis. Myself and others are here to help you navigate your way through it. About brushing teeth with sterilized water..... I do not do it, but others on this site might. I probably would if I had a high colony count and multiple kinds of bacteria infecting me. It would also depend on what KIND of MAC I had. If I had M. Abscessus or MAI, then I might consider sterilizing. I have Avium Mycobacterium, it is a slow grower & I am on monthly doses of alternating antibiotics for life. I am not on the BIG 3, I do 10 days every other month on one that is totally tolerable, and then 28 days on Tobramycin for pseudomonas. Do you want to tell me more about what is going on with you?
I saw my infectious disease doctors and my pulmonary doctor at Mayo yesterday. My colony count is down from 14 to 5. I am on the big three, and my pulmonologist seemed to think it will help to add a nebulizer. He gave me the prescription for that and the saline and for combivent. I do not know if my insurance will pay for this or not. Before I check, how did others go about filling the script, and what brand do you recommend. Thank you.
@windwalker My name is Kris, thanks for your reply. I am just wrapping my head around being diagnosed with this disease. There is so much to learn plus it is very abrupt to change my entire routine. I started on the Big 3 last week and am looking at 3 years on the meds so I am definitely new to this all. I'm certainly glad to have found this group.
Kris.....by your posting it sounds like you are a gardener...do you think you picked upMAC in the garden? I too have MAc and believe that’s where I got mine.
Did they say why 3 years? I was told 18 months. Did they tell you what type you have? In a way I think I am afraid to go off the meds
I read that potting soil can be a problem. I think that was my source.
@gardenernj Hi Kris. Nice to 'meet' you; wish it were on a gardening site or something instead of MAC. (sigh) Have you been able to navigate this site alrigjt? Please feel free to ask questions, if I don't know the answer; I can try to find it.
@jkiemen I have MAI and from looking at my CT scan, my lungs are in bad shape. If I just had scaring, my ID Dr would have recommended every other day but I need to take the Big 3 every day. From what I understand, these meds take time to work. I think 3 years sounds like such a long time but it's inspiring to read when people in this group get to come off their meds.
I do wonder about that but I hate to think that my beloved garden harmed me! My doctors think I've had this for a long time. I've traveled a lot around the world and lived in Asia too which is where I first was diagnosed with asthma. The air quality is horrible and I did drink the water. No regrets though, it was an amazing experience to work there. I have never smoked, exercise and eat healthy food. I considered myself healthy until my recent diagnosis. One of my doctors said I easily could have picked it up right here at home from the water and another said I probably picked it up overseas. I know it doesn't matter but like you, I do wonder.