1. < MAC & Bronchiectasis

Diagnosed with MAC but not being treated

Posted by deborahwolf @deborahwolf, Feb 15, 2019

I was diagnosed with MAC in October 2018. My pulmonologist discussed treatment but wanted to conduct a sputum induction procedure to determine bacterial load. The load was low enough that he felt we could wait on treatment. I saw him for a follow up this week and he did not recommend treatment because my symptoms are minor (shortness of breath and occasional fatigue) and are not progressing. He indicated treatment is symptom driven and he doesn’t recommend starting treatment unless the symptoms become debilitating. He wants to see me again in 6 months.
Has anyone else had this type of recommendation? Although I am very happy not taking the medications I don’t want to let the infection to progress to a dangerous level and regret not being treated sooner.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Brenda R. | @brigby | Feb 20, 2019
In reply to @suzyqueue "@brigby - Only if I could fit in gym time in the morning....oh and the energy..." + (show)
@suzyqueue

@brigby - Only if I could fit in gym time in the morning....oh and the energy LOL! I usually go to the gym after work around 5:30 or 6:00 and weekend afternoons. This really does require everything you said. I remember my doctor saying that the nebulizing is just "a pain in the butt" and I thought "how big of a deal can it be"? LOL! One I got into routine it wasn't so bad. Adding the Amikacin treatments to my day and all that has to be done with sterilization etc with it is another story....again - once in routine not so bad.

Jump to this post

@suzyqueue, @windwalker Suzy, I love your determination! We can do this!

Easy for me to say, I’m not on the Big 3 or Amikacin yet - I have colonized MAC in my lungs and abscessus in my sinuses...if I get 1 more sputum sample back positive for abscessus in my lungs & am symptomatic, then I’ll probably have to start the “Big” treatment. 🙏

I see advertisements for the “So Clean” CPAP Sterilizing device, and I’m curious if we could throw our nebulizer equipment & sinus cleaning equipment in something like that to save some time as well as get a better level of sterilization?

REPLY
2 replies
pfists | @pfists | Feb 20, 2019
In reply to @brigby "@suzyqueue, @windwalker Suzy, I love your determination! We can do this! Easy for me to say,..." + (show)
@brigby

@suzyqueue, @windwalker Suzy, I love your determination! We can do this!

Easy for me to say, I’m not on the Big 3 or Amikacin yet - I have colonized MAC in my lungs and abscessus in my sinuses...if I get 1 more sputum sample back positive for abscessus in my lungs & am symptomatic, then I’ll probably have to start the “Big” treatment. 🙏

I see advertisements for the “So Clean” CPAP Sterilizing device, and I’m curious if we could throw our nebulizer equipment & sinus cleaning equipment in something like that to save some time as well as get a better level of sterilization?

Jump to this post

@brigby
@suzyqueue
I got the idea from someone on this forum that I have been using to sterilize my nebulizers its a baby bottle sterilizer. I purchased mine off Amazon It was pretty cheap under 50.00. It works well and quick 15 minutes and I know that the equipment is sterile.
I have about 6 nebulizer and at store them in soapy water until the end of the week then rinse and throw in the sterilizer.

Shari

REPLY
2 replies
Brenda R. | @brigby | Feb 20, 2019
In reply to @pfists "@brigby @suzyqueue I got the idea from someone on this forum that I have been using..." + (show)
@pfists

@brigby
@suzyqueue
I got the idea from someone on this forum that I have been using to sterilize my nebulizers its a baby bottle sterilizer. I purchased mine off Amazon It was pretty cheap under 50.00. It works well and quick 15 minutes and I know that the equipment is sterile.
I have about 6 nebulizer and at store them in soapy water until the end of the week then rinse and throw in the sterilizer.

Shari

Jump to this post

@pfists thank you

REPLY
Tina Sims | @tinaesims | Feb 20, 2019
In reply to @brigby "@suzyqueue, @windwalker Suzy, I love your determination! We can do this! Easy for me to say,..." + (show)
@brigby

@suzyqueue, @windwalker Suzy, I love your determination! We can do this!

Easy for me to say, I’m not on the Big 3 or Amikacin yet - I have colonized MAC in my lungs and abscessus in my sinuses...if I get 1 more sputum sample back positive for abscessus in my lungs & am symptomatic, then I’ll probably have to start the “Big” treatment. 🙏

I see advertisements for the “So Clean” CPAP Sterilizing device, and I’m curious if we could throw our nebulizer equipment & sinus cleaning equipment in something like that to save some time as well as get a better level of sterilization?

Jump to this post

I was wondering the same thing.

REPLY
Tina Sims | @tinaesims | Feb 20, 2019
In reply to @pfists "@brigby @suzyqueue I got the idea from someone on this forum that I have been using..." + (show)
@pfists

@brigby
@suzyqueue
I got the idea from someone on this forum that I have been using to sterilize my nebulizers its a baby bottle sterilizer. I purchased mine off Amazon It was pretty cheap under 50.00. It works well and quick 15 minutes and I know that the equipment is sterile.
I have about 6 nebulizer and at store them in soapy water until the end of the week then rinse and throw in the sterilizer.

Shari

Jump to this post

Do you use the sterilizer that goes in the microwave?

REPLY
1 reply
suzyqueue | @suzyqueue | Feb 20, 2019
In reply to @tinaesims "Do you use the sterilizer that goes in the microwave?" + (show)
@tinaesims

Do you use the sterilizer that goes in the microwave?

Jump to this post

@tinaesims - I use distilled water and literally boil it for my Amikacin equipment. It's what the nurse and others in the program instruct to do. If on vacation or somewhere inconvenient, I think some use hot plates

REPLY
1 reply
Tina Sims | @tinaesims | Feb 20, 2019
In reply to @suzyqueue "@tinaesims - I use distilled water and literally boil it for my Amikacin equipment. It's what..." + (show)
@suzyqueue

@tinaesims - I use distilled water and literally boil it for my Amikacin equipment. It's what the nurse and others in the program instruct to do. If on vacation or somewhere inconvenient, I think some use hot plates

Jump to this post

How often do you do it?

REPLY
1 reply
suzyqueue | @suzyqueue | Feb 20, 2019
In reply to @tinaesims "How often do you do it?" + (show)
@tinaesims

How often do you do it?

Jump to this post

I do the treatment every night and sterilize after every treatment.

REPLY
1 reply
Tina Sims | @tinaesims | Feb 20, 2019
In reply to @suzyqueue "I do the treatment every night and sterilize after every treatment." + (show)
@suzyqueue

I do the treatment every night and sterilize after every treatment.

Jump to this post

Do you also use the baby bottle steamer in the microwave once a week?

REPLY
View MoreView Less
Please sign in or register to post a reply.