1. < MAC & Bronchiectasis

Options if MAC goes untreated

Posted by goatlady @goatlady, Feb 22, 2021

MY ID Doctor took me off the "BIG 3" last October because I wasn't able to produce any sputum (never have). Had a CT-Scan done in January showing the MAC is still and Bronchiectasis has gotten worst. My Pulmonary Doctor got in touch with ID Doctor about putting me back on the "Big 3". The ID Doctor won't, she called in a prescription of propranlol. Many years ago another doctor prescribed that for me. I had the worst reaction to that. There is no way I am going to try that drug again. So what happens if I don't treat the MAC?

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Toni D. | @tcd518 | Oct 22 12:25pm
In reply to @sueinmn "Update Report on my pulmonologist and CT results @cwal @pacathy @lilianna @rstel7272 and anyone else who..." + (show)
@sueinmn

Update Report on my pulmonologist and CT results
@cwal @pacathy @lilianna @rstel7272 and anyone else who sent me good vibes - thank you!
I got a great report from my visit, but this is a bit long.
First, my new pulmonologist is awesome - I have been trying to get in to see her for almost 5 years, and finally! She is well-engaged with other pulmonologists who are expert in Bronchiectasis and NTM, including at Mayo. She is very up-to-date on the latest protocols and emerging treatments.
Second, she has assembled a team within our clinic who all work closely to keep us healthy - Respiratory Therapy, Speech Therapy, ENT, Infectious Disease and an awesome nurse.
Third, she LISTENS closely and respects my experience as a patient.

What were my results?
My CT shows stable bronchiectasis, no signs of inflammation, no mention of nodules or cavities. Yay!
We have agreed on twice weekly saline, once daily Breyna (Symbicort.) This, of course, will be increased in case of a respiratory bug or exacerbation. For daily airway clearance - her preferred method is via 30-60 minutes of exercise so I have resumed my brisk walking routine and am nearly up to one hour a day.
With the stable CT, we will forego the sputum culture for now.
We have set up a treatment protocol for exacerbations, which we already used when I had Covid - increased nebs, 5 days of steroids, and antibiotic in reserve. I have instructions to start steroids with any exacerbation and send her a message - then if not improved in the 5 days, start the antibiotic and notify her.
She diagnosed my "choking" episodes as Vocal Chord Dysfunction and I have already started speech therapy and corrective exercises. I will also see the ENT to make sure there is no trachea/vocal chord damage from years of coughing.
She was knowledgeable about Mayo Connect & NTM-ir and happy I was part of it.
For the first year, we will consult every 3 months, or more often if I have a problem.

This was followed by a visit to my cardiologist who feels the treatment for my newly-diagnosed blockage is going well, and all other tests show my heart and arteries to have no changes from earlier exams. The medications have controlled the long-time angina and shortness of breath that I thought it was "just asthma". So no invasive procedures and follow up in 6 months.

To say I feel blessed by finally making these connections is a gross understatement!

Jump to this post

Great news, Sue. So glad you are liking your new doctors and doing well!

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 22 12:42pm
In reply to @tcd518 "Great news, Sue. So glad you are liking your new doctors and doing well!" + (show)
@tcd518

Great news, Sue. So glad you are liking your new doctors and doing well!

Jump to this post

I only wish the shoulder surgeon didn't refer to me as an "older person" - agh! In my mind I'm still 29, but I fear the mirror agrees with the doc - I see wrinkles and spots.

REPLY
1 reply
@ling | @wangling | Oct 23 10:37am
In reply to @sueinmn "Update Report on my pulmonologist and CT results @cwal @pacathy @lilianna @rstel7272 and anyone else who..." + (show)
@sueinmn

Update Report on my pulmonologist and CT results
@cwal @pacathy @lilianna @rstel7272 and anyone else who sent me good vibes - thank you!
I got a great report from my visit, but this is a bit long.
First, my new pulmonologist is awesome - I have been trying to get in to see her for almost 5 years, and finally! She is well-engaged with other pulmonologists who are expert in Bronchiectasis and NTM, including at Mayo. She is very up-to-date on the latest protocols and emerging treatments.
Second, she has assembled a team within our clinic who all work closely to keep us healthy - Respiratory Therapy, Speech Therapy, ENT, Infectious Disease and an awesome nurse.
Third, she LISTENS closely and respects my experience as a patient.

What were my results?
My CT shows stable bronchiectasis, no signs of inflammation, no mention of nodules or cavities. Yay!
We have agreed on twice weekly saline, once daily Breyna (Symbicort.) This, of course, will be increased in case of a respiratory bug or exacerbation. For daily airway clearance - her preferred method is via 30-60 minutes of exercise so I have resumed my brisk walking routine and am nearly up to one hour a day.
With the stable CT, we will forego the sputum culture for now.
We have set up a treatment protocol for exacerbations, which we already used when I had Covid - increased nebs, 5 days of steroids, and antibiotic in reserve. I have instructions to start steroids with any exacerbation and send her a message - then if not improved in the 5 days, start the antibiotic and notify her.
She diagnosed my "choking" episodes as Vocal Chord Dysfunction and I have already started speech therapy and corrective exercises. I will also see the ENT to make sure there is no trachea/vocal chord damage from years of coughing.
She was knowledgeable about Mayo Connect & NTM-ir and happy I was part of it.
For the first year, we will consult every 3 months, or more often if I have a problem.

This was followed by a visit to my cardiologist who feels the treatment for my newly-diagnosed blockage is going well, and all other tests show my heart and arteries to have no changes from earlier exams. The medications have controlled the long-time angina and shortness of breath that I thought it was "just asthma". So no invasive procedures and follow up in 6 months.

To say I feel blessed by finally making these connections is a gross understatement!

Jump to this post

I am so happy for you, Sue. What encouraging news. To have a right doctor and the right path to take to manage the condition are what we are all hoping for.
Thank you so much for sharing your treatment plan and your routine practice.

Ling

REPLY
frankie160 | @frankie160 | Oct 23 8:06pm

Sue,
Congrats on your CT Scan results and your great visit with your new Pulmon, and may you continue to be blessed!!!
It so happens I too got much improved results last Tuesday with my recent CT Scan. Stable Bronchiectasis, no sign of NTM/MAC with very little inflammation. One new nodule in the upper left lobe 5 X 9 mm which needs to be followed in 6 months. I always have nodules of some sort. As a result I have been taken off the Big 3 as of 10/21/24, my Trelegy dose has been lowered and officially off Arikayce since 3/24. My breathing capacity has improved by 100% according to my PFT and I'm back playing tennis!
What more can I ask for.
Onward and Forward,
Flo @frankie160

REPLY
1 reply
Toni D. | @tcd518 | Oct 24 8:54am
In reply to @frankie160 "Sue, Congrats on your CT Scan results and your great visit with your new Pulmon, and..." + (show)
@frankie160

Sue,
Congrats on your CT Scan results and your great visit with your new Pulmon, and may you continue to be blessed!!!
It so happens I too got much improved results last Tuesday with my recent CT Scan. Stable Bronchiectasis, no sign of NTM/MAC with very little inflammation. One new nodule in the upper left lobe 5 X 9 mm which needs to be followed in 6 months. I always have nodules of some sort. As a result I have been taken off the Big 3 as of 10/21/24, my Trelegy dose has been lowered and officially off Arikayce since 3/24. My breathing capacity has improved by 100% according to my PFT and I'm back playing tennis!
What more can I ask for.
Onward and Forward,
Flo @frankie160

Jump to this post

Congratulations, Flo! What good news! You fought the good fight and won! Stay healthy.

REPLY
reneemc | @reneemc | Oct 24 12:05pm
In reply to @larrycmb "Good Luck My wife has been on 2 different sets of 3 and 2 of them..." + (show)
@larrycmb

Good Luck
My wife has been on 2 different sets of 3 and 2 of them have become resistant to her Mac . Now they want to start her on Arikayce which has bad side effects
I should her your post
She does all those other things you do

Jump to this post

Larry, did susceptibility testing show the meds had become resistant?

REPLY
1 reply
larrycmb | @larrycmb | Oct 24 1:12pm
In reply to @reneemc "Larry, did susceptibility testing show the meds had become resistant?" + (show)
@reneemc

Larry, did susceptibility testing show the meds had become resistant?

Jump to this post

Yes 4 of them over time

REPLY
blm1007blm1007 | @blm1007blm1007 | Oct 24 2:15pm
In reply to @sueinmn "I only wish the shoulder surgeon didn't refer to me as an "older person" - agh!..." + (show)
@sueinmn

I only wish the shoulder surgeon didn't refer to me as an "older person" - agh! In my mind I'm still 29, but I fear the mirror agrees with the doc - I see wrinkles and spots.

Jump to this post

Even at 82 when they the medical people remind me that I am no longer 29...I just laugh when they say that....its true!
Who cares as long as we are living life the best we can... especially if we are lucky to have all our senses working, a brain that is still functioning well along with legs and arms that allow us to do what we need to do. Hope that is how it is for all of us.
The only thing that bothers me is when I get the feeling others are overlooking me due to being older, that tends to happen in certain types enviroments. Oh well, eventually I get what I want, service, and in many times it works out to my favor.
Barbara

REPLY
blm1007blm1007 | @blm1007blm1007 | Oct 24 2:22pm
In reply to @sueinmn "Update Report on my pulmonologist and CT results @cwal @pacathy @lilianna @rstel7272 and anyone else who..." + (show)
@sueinmn

Update Report on my pulmonologist and CT results
@cwal @pacathy @lilianna @rstel7272 and anyone else who sent me good vibes - thank you!
I got a great report from my visit, but this is a bit long.
First, my new pulmonologist is awesome - I have been trying to get in to see her for almost 5 years, and finally! She is well-engaged with other pulmonologists who are expert in Bronchiectasis and NTM, including at Mayo. She is very up-to-date on the latest protocols and emerging treatments.
Second, she has assembled a team within our clinic who all work closely to keep us healthy - Respiratory Therapy, Speech Therapy, ENT, Infectious Disease and an awesome nurse.
Third, she LISTENS closely and respects my experience as a patient.

What were my results?
My CT shows stable bronchiectasis, no signs of inflammation, no mention of nodules or cavities. Yay!
We have agreed on twice weekly saline, once daily Breyna (Symbicort.) This, of course, will be increased in case of a respiratory bug or exacerbation. For daily airway clearance - her preferred method is via 30-60 minutes of exercise so I have resumed my brisk walking routine and am nearly up to one hour a day.
With the stable CT, we will forego the sputum culture for now.
We have set up a treatment protocol for exacerbations, which we already used when I had Covid - increased nebs, 5 days of steroids, and antibiotic in reserve. I have instructions to start steroids with any exacerbation and send her a message - then if not improved in the 5 days, start the antibiotic and notify her.
She diagnosed my "choking" episodes as Vocal Chord Dysfunction and I have already started speech therapy and corrective exercises. I will also see the ENT to make sure there is no trachea/vocal chord damage from years of coughing.
She was knowledgeable about Mayo Connect & NTM-ir and happy I was part of it.
For the first year, we will consult every 3 months, or more often if I have a problem.

This was followed by a visit to my cardiologist who feels the treatment for my newly-diagnosed blockage is going well, and all other tests show my heart and arteries to have no changes from earlier exams. The medications have controlled the long-time angina and shortness of breath that I thought it was "just asthma". So no invasive procedures and follow up in 6 months.

To say I feel blessed by finally making these connections is a gross understatement!

Jump to this post

I had not been on the site for a week or more, busy getting ready for my trek to Tyler and a few days stay in the area.
So glad to hear about all your good news Sue. So encouraging....now for my "gut' decision about starting the anti-biotics.
Barbara

REPLY
spectrumcyclist | @spectrumcyclist | Nov 14 10:33pm

Get a new team. Hopefully you are in an area and have insurance where there are options. At a minimum get a 2d opinion. What’s broke can’t always be fixed.

REPLY
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