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@pacathy why did you stop covering the vents after it's dry and the machine has cooled?
I've become as overwhelmed in the past few days as I was on the first day of diagnosis just a little over 3 months ago on the best way to make sure we are cleaning and sterilizing to reduce the possibility of infections and kills germs on our equipment. I understand different groups have different ways based on their comfort level - I'm just having trouble wrapping my head around all the science surrounded with NTM's, MAC, etc. luckily so far I'm infection feee just dealing with Bronchiectasis like that isn't enough on its own 🤦♀️ I do appreciate this group for what feels more like a true support group. Learning who to trust about information has been one of my biggest hurdles. I've always been a huge personal patient advocate for myself and questioning is how I feel comfortable in my efforts to gain more knowledge. But so many have so many different answers 😢
Replies to "@pacathy why did you stop covering the vents after it's dry and the machine has cooled?..."
I totally agree with your statement!! This group is phenomenal!!! Many of us have recieved more valuable and informative feedback/information from this community than from any medical professional. This includes myself. I learned of all the different AC techniques not from a Doctor or Respiratory Therapist, or Physiotherapist, but from this group and/or webinars and you tube. I always thought it would be nice if you could get appointments with a Respiratory Therapist or Physiotherapist periodically to make sure your airway clearance methods are being done correctly. Also the only guidance you’ll ever get about cleaning and sterilization is from the manufacturer of whatever device you decide to use. I believe a liability factor comes into play there. I wish there were just Respiratory Therapist or Physiotherapist offices around much like Physical Therapist and Occupational Therapist are in some areas. Does anyone know of any? Anyway the only final answer I believe you’ll get is “You have to experiment and see what works best for you everybody is different”. While that is a very valid point, I wonder sometimes if it is just a way of saying we don’t know the correct answer. Anyway please stay with this group you’ll receive so much valuable support and information and you can apply the advice given to you, to see if it helps, best wishes & Gid Bless.
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@kate2025 I stopped because the paper towels kept slipping off. I think it's low risk because it's under a cabinet and on different wall than sink. Putting a clean kitchen towel over it would also work and is easy.
I think it's confusing because there are several options that work. I keep tweaking what I do. Jennifer Honda from National Jewish just did a class on coping with environment that might help. https://m.youtube.com/watch