Connect
Comment receiving replies
Best practice medicine would be a referal to a respitory therapist as soon as you get this diagnosis. Feel I'm trying to learn Chinese by braile in figuring out use of nebulizer, aerobika, airway clearance and proper sterilization techniques for all. Just diagnosed with Pseudomonas Oryzihabitans, I'm like what the hell did I do to get this on top of mycrobacterium lentiflavin...JNH in Dec.
Replies to "Best practice medicine would be a referal to a respitory therapist as soon as you get..."
I know what you mean! I was told to nebulize albuterol and 7% saline when first diagnosed. I had never used a nebulizer in my life. I watched YouTube videos about using the nebulizer. I had to guess that I would probably use the albuterol first and then the saline. Months later, I joined a support group online (through NTMir), and then I learned that I needed to be sterilizing my nebulizer cup by boiling for 10 minutes, not just washing it in soapy water. They were also the ones who told me to get and use an Aerobika.
Connect
I live in Jacksonville, Florida and there are noe respiratory therapists in Jax or the Orlando area.
I understand what you are saying as far as learning the whole process yourself. I have met other people with this disease and we each learn things and share with each other.
I go to the Mayo Clinic here in Jax and there is one respiratory therapist here that just tells you over a zoom meeting, what to buy and in what order to use it. As far as how to use it, there is no instruction.
One of our group here in Jax went to NJH in September and had a very positive experience. She shared some tips with the rest of the group. Good luck with at NJH. I am sure you will come away with some good information.