Just found out I have mycobacterium abscessus!
AM VERY SCARED HAS ANY ELSE HAD THIS STAIN OF THE MYCOBACTERIA. WOULD LOVE TO TALK WITH SOMEONE WHO HAS GONE THROUGH THIS!!!
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
I am very grateful to have Dr. Huitt BUT she is retiring in a little under 2 years. She is irreplaceable.
I too have been diagnosed with Mycrobacterium Abscessus. I am currently being treated by U of MN Infectious Disease Dr. started on Iv infusions of Amikacyn once a day, Tigecycline 2 infusions daily & Linezolid orally twice a day. Linezolid made me very, very sick. Dr finally took me off it and I continue with the infusions everyday. It’s been 2&1/2 months so far of twice daily infusions. I Nebulizer 3% saline, which doesn’t produce for me in airway clearance, am waiting for a prescription for 7% & hoping I can be more productive with this. I Nebulize once a day. I’ve not seen a respiratory therapist to help me with this & hope I’m doing it right. Maybe when Covid is over I can receive this assistance. Any advice is appreciated.
Hi @dolson0730 …Here is a basic video by National Jewish Health on nebulizing. After I nebulize, I bend at the waist over the sink and huff, huff, huff to bring up what sputum that I am able to "evict". Hope this helps. Kate
You do so much already. Would it be possible for you to nebulize twice a day instead of once; I realize that you don't get up much when you do so it may not be worth the time (but things may improve if you use the 7%)? Dr. Huitt advised me to do it twice a day because more mucous plugs showed on my CT. When you do see a respiratory therapist, please ask him or her about using a fluttering device like an aerobika when you nebulize. Might you be eligible for a vest? Dr. Huitt suggested that I could use the vest when I nebulize. I appreciate your sharing your experience; thank you. Wishing you good luck and success.
Thank you! I appreciate your advice!
Do you go through your doctor to try and get an aerobika? A Vest? I can message my Dr and ask for a prescription for those? Not sure if I could even get locally? But would definitely try if I could get those. Getting into Respiratory Therapy would have to wait till after this Covid pandemic, they aren't taking appointments, only emergencies. Thank you!
Do you happen to have a video to share regarding the actual breathing techniques? or huffing? Thank you!
@dolson0730 …Wow! I learned watching these too!!
@dolson0730 I ordered my Aerobika on line. Although my Dr told me to use it, he never gave me a Rx for it. But it would be wise to have a respiratory therapist instruct you how to use it. I originally Googled how to use it, but my resp. ther. showed me a different way than what I saw on line. I do a total of 50 breaths twice per day with huff coughing in between. A Huff cough is like trying to fog a mirror. First take a deep breath and then Expel as much air as you can. 10 breaths sitting upright then huff, huff. 10 breaths laying on my right side with left arm over head. Then 10 on my back. Then 10 on my left side with right arm overhead and then 10 on my back. Hope this helps. Others may do it differently.
I honestly don't know? I just thought you probably would need a prescription for the aerobika & vest, and that was the route to follow?