What is your Top Question about MAC and Bronchiectasis?

Posted by Sue, Volunteer Mentor @sueinmn, Mar 13 8:51am

Earlier this month, a "newish" member, @sisterpulse , posed a list of questions she has as a person recently diagnosed with MAC.

I promised to share the list, but then I thought maybe many of us have that one question we would really like answered, or at least for someone to point us in the direction of the latest treatment protocols or research.

I am hoping those of you who like to do a little research, including @pacathy , @scoop , @windwalker , @becleartoday and @rstel7272 will join me in finding the best answers.

See sisterpulse's questions in the next post.

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

cavlover | @cavlover | Mar 16 1:00pm

In reply to @rstel7272 "There is more than just MAC we are susceptible to" + (show)

I understand that, but it just seems like MAC is so hard to rid.
Not going to worry…. Just was wondering. I’ll just continue doing what works.

Sue, Volunteer Mentor | @sueinmn | Mar 16 8:49pm

In reply to @cavlover "I understand that, but it just seems like MAC is so hard to rid. Not going..." + (show)

Not everyone who has Bronchiectasis gets MAC, and some people manage to dodge infections for a good long time by being careful.
Every time I am tempted to put airway clearance aside, I get a wheeze or cough that reminds me my lungs are not now, nor will ever be "normal."
Sue

cwal | @cwal | Mar 16 9:48pm

In reply to @sueinmn "Household vinegar (also known as canning or cleaning vinegar) +where I shop is labelled 5% or..." + (show)

Thank you. Now, how often should one soak their showerhead in vinegar to help keep down the Mycobacterium? Weekly? Monthly?

Sue, Volunteer Mentor | @sueinmn | Mar 17 6:59pm

In reply to @cwal "Thank you. Now, how often should one soak their showerhead in vinegar to help keep down..." + (show)

The recommendation from Dr Joe Falkinham, who many view as the foremost expert on NTM exposure in water, is 30 minutes once a month. Remember, it takes time for the biofilm to form, and even longer for the NTM to grow there, so daily or weekly soaking is not necessary.
Sue

pacathy | @pacathy | Mar 18 6:21am

In reply to @cavlover "I understand that, but it just seems like MAC is so hard to rid. Not going..." + (show)

After I was diagnosed with bronchiectasis and the MAC cultures were negative, I was curious about this, too. While I didn’t find the answer about our chance of getting MAC over our life time, I found a some interesting info.
Here’s one.
https://bmjopen.bmj.com/content/bmjopen/12/8/e055672.full.pdf

cavlover | @cavlover | Mar 18 7:08am

Thank you for sharing this. Very interesting!

scoop | @scoop | Mar 18 10:31am

One of my most nagging and practical questions about bronchiectasis, will there ever be any regime/drug/other that will shorten the time it takes to clear the lungs? I need some shortcuts! Presently, I estimate almost 2 hours/day are spent attending to "maintenance" of my airways. This time includes setting up, nebbing, breathing exercises, huff coughs, clean up and sterilization. And the time spent here - lol.

And a followup to my question - can cardio exercise take some of the place of airway clearance?

Not sure my question helps @sisterpulse or @sueinmn !

annagh | @annagh | Mar 18 12:20pm

In reply to @scoop "One of my most nagging and practical questions about bronchiectasis, will there ever be any regime/drug/other..." + (show)

It does take a lot of time. I heard Dr. Kevin Winthrop, ID doctor at OHUS, say on a video, that given time constraints he thought exercise might be more beneficial than a second nebulizing session. I try to do all three, but keep this in mind when I can't manage to do that.
Anna

Sue, Volunteer Mentor | @sueinmn | Mar 18 2:04pm

In reply to @pacathy "After I was diagnosed with bronchiectasis and the MAC cultures were negative, I was curious about..." + (show)

Way to go Cathy! Stealing this one for the ABC's of MAC & Bronchiectasis Resource Discussion!
You get the prize for "link of the week" this time.
Sue

Sue, Volunteer Mentor | @sueinmn | Mar 18 2:37pm

In reply to @scoop "One of my most nagging and practical questions about bronchiectasis, will there ever be any regime/drug/other..." + (show)

Absolutely, exercise can take the place of huff coughing, etc - I have explained before that I often use Symbicort inhaler (in place of albuterol), a little saline in the neb (not necessarily the whole 4ml) while on Connect. Then I do my exercise du jour - brisk walk, 40 minutes of yoga, or cardio + light weights, or 30-40 minutes brisk weeding and pickup in the yard. By the time I am done, I have either already coughed up a lot of mucus in the process or it's ready to be huffed out. Exercise that involves bending and reaching produces the best results for me. Once a day keeps me healthy - I double up if I have a (RARE) exacerbation or respiratory bug.

My cleanup routine, again, might not appeal to everyone, but it was given to me by my pulmonologist when I was first diagnosed, and has worked for me for about 6 years. Keep in mind that soap & HOT water will wash away the germs. Hot water soak in dish detergent after each use, followed by hot rinse & air dry. Weekly sterilization in a saucepan.

Sue