Going to be infusing 3 drugs for m abscessus every 8 hours at home with a PICC line. Any tips for dealing with drug side effects PLUS sleep deprivation?
All very interesting. The chances are I will have to go on IV Amikacin for Abscessus. I gather going to work is out of the question? Has your hearing been affected? Did you have your initial treatment in hospital? Wishing you all the best. So much information on here.
I did not do IV Amikacin, see an update I just posted. I'm retired, but depending on one's work situation, the infusion could be done at work. Once the infusion started, I kept the ball in a fanny pack, and could do what ever I wanted for the 30 minutes. It took about 5 minutes to get the infusion hooked up and about 5 minutes to remove and flush the PICC line.
All very interesting. The chances are I will have to go on IV Amikacin for Abscessus. I gather going to work is out of the question? Has your hearing been affected? Did you have your initial treatment in hospital? Wishing you all the best. So much information on here.
My sister will be getting IV antibiotics for abscessus after a course of steroids for her very inflamed lungs. She also has M. Avium and has been on multiple AB’s treating that for 9 months. She will be so happy to join this group to learn what others have experienced. Thx!
Yes, we need to share how we feel. A lot of people do not understand as NTM is rare enough and so is bronchiectasis. I had not heard of either until 2022. I have learned so much from everyone on here. The US is way ahead of the UK but I think we are catching up. Look after yourself.
My sister will be getting IV antibiotics for abscessus after a course of steroids for her very inflamed lungs. She also has M. Avium and has been on multiple AB’s treating that for 9 months. She will be so happy to join this group to learn what others have experienced. Thx!
Revised plan is for Amikacin 3 times a week plus 2 orals so a lot better schedule-wise. I have subspecies abscessus. Anyone else with experience of this one? I understand it is a stubborn one.
Connect
Connect
Like
Helpful
Hug
I did not do IV Amikacin, see an update I just posted. I'm retired, but depending on one's work situation, the infusion could be done at work. Once the infusion started, I kept the ball in a fanny pack, and could do what ever I wanted for the 30 minutes. It took about 5 minutes to get the infusion hooked up and about 5 minutes to remove and flush the PICC line.
-
Like -
Helpful -
Hug
1 ReactionMy sister will be getting IV antibiotics for abscessus after a course of steroids for her very inflamed lungs. She also has M. Avium and has been on multiple AB’s treating that for 9 months. She will be so happy to join this group to learn what others have experienced. Thx!
-
Like -
Helpful -
Hug
1 ReactionThank you everyone who posted on this. You are all so kind and brave. Just knowing people care makes me feel better.
Yes, we need to share how we feel. A lot of people do not understand as NTM is rare enough and so is bronchiectasis. I had not heard of either until 2022. I have learned so much from everyone on here. The US is way ahead of the UK but I think we are catching up. Look after yourself.
👍
Revised plan is for Amikacin 3 times a week plus 2 orals so a lot better schedule-wise. I have subspecies abscessus. Anyone else with experience of this one? I understand it is a stubborn one.