1. < MAC & Bronchiectasis
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How is everybody doing?

Posted by Terri Martin, Volunteer Mentor @windwalker, Aug 5, 2017

Hello All! The forum has gone quite. Haven't heard from some of you in awhile. I am hoping some of you will check in. As for me, I just got ALL of my sputem lab reports going back to 2013 as I had requested. My very last test from June came back negative for everything. Yay!!!! I still battle fatigue and shortness of breath though. There were some organisms picked up in the past that I had not recognized, so I am going to Google them. Look forward to hearing from everyone! -Terri M.

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tdrell | @tdrell | Aug 13, 2017
In reply to @cld120 "@auntnanny, my MAC was discovered via a long route, like others too, I suspect. I also..." + (show)
@cld120

@auntnanny, my MAC was discovered via a long route, like others too, I suspect. I also was told I have mild bronchiecstasis. (Irreversible underlying lung disease) I started coughing last November & finally went to my dr at the end of January, 2017. I'd been exhausted the months preceding it, as well. After several abnormal lung x-rays & being treated for pneumonia, I had a CT scan. My dr referred me to a pulmonologist, who did a bronchoscopy. I was only worried about lung cancer (my mom developed it at age 66; I am 59.)

After subsequentally being diagnosed with MAC, I read everything I could find and made an appt to go to the Rochester, MN Mayo Clinic, a great decision!! Just beginning the "Big Three" meds and hoping the Infectious Disease specialist I see at the end of August at the University of Kentucky Medical Center is someone I can work with.

I did not have a good experience with one locally prior to going to Mayo. He seemed quite out of touch regarding MAC & made ~a half dozen totally false statements about it. For example, he said it does not involve fatigue & is not being diagnosed more frequently--it is, especially in the southeast U.S., according to my Mayo dr. Oh yeah, and that he can cure everyone, except those who are non-compliant with their meds! Grrrr...

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Auntnanny....I asked re CAT cause I believe that NJH monitor NTM with CAT scans and the 3 sputums....glad u have had them....and most recent one was a little better!!!
Tdrell

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 13, 2017
In reply to @cld120 "@auntnanny, my MAC was discovered via a long route, like others too, I suspect. I also..." + (show)
@cld120

@auntnanny, my MAC was discovered via a long route, like others too, I suspect. I also was told I have mild bronchiecstasis. (Irreversible underlying lung disease) I started coughing last November & finally went to my dr at the end of January, 2017. I'd been exhausted the months preceding it, as well. After several abnormal lung x-rays & being treated for pneumonia, I had a CT scan. My dr referred me to a pulmonologist, who did a bronchoscopy. I was only worried about lung cancer (my mom developed it at age 66; I am 59.)

After subsequentally being diagnosed with MAC, I read everything I could find and made an appt to go to the Rochester, MN Mayo Clinic, a great decision!! Just beginning the "Big Three" meds and hoping the Infectious Disease specialist I see at the end of August at the University of Kentucky Medical Center is someone I can work with.

I did not have a good experience with one locally prior to going to Mayo. He seemed quite out of touch regarding MAC & made ~a half dozen totally false statements about it. For example, he said it does not involve fatigue & is not being diagnosed more frequently--it is, especially in the southeast U.S., according to my Mayo dr. Oh yeah, and that he can cure everyone, except those who are non-compliant with their meds! Grrrr...

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@auntnanny, Jan, that is good news! "a little better" and "about the same" is very good news. This is a degenerative disease that we have, to keep it STABLE is our main goal.

REPLY
auntnanny | @auntnanny | Aug 13, 2017
In reply to @cld120 "@auntnanny, my MAC was discovered via a long route, like others too, I suspect. I also..." + (show)
@cld120

@auntnanny, my MAC was discovered via a long route, like others too, I suspect. I also was told I have mild bronchiecstasis. (Irreversible underlying lung disease) I started coughing last November & finally went to my dr at the end of January, 2017. I'd been exhausted the months preceding it, as well. After several abnormal lung x-rays & being treated for pneumonia, I had a CT scan. My dr referred me to a pulmonologist, who did a bronchoscopy. I was only worried about lung cancer (my mom developed it at age 66; I am 59.)

After subsequentally being diagnosed with MAC, I read everything I could find and made an appt to go to the Rochester, MN Mayo Clinic, a great decision!! Just beginning the "Big Three" meds and hoping the Infectious Disease specialist I see at the end of August at the University of Kentucky Medical Center is someone I can work with.

I did not have a good experience with one locally prior to going to Mayo. He seemed quite out of touch regarding MAC & made ~a half dozen totally false statements about it. For example, he said it does not involve fatigue & is not being diagnosed more frequently--it is, especially in the southeast U.S., according to my Mayo dr. Oh yeah, and that he can cure everyone, except those who are non-compliant with their meds! Grrrr...

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tdrelll ---- Of course I would have loved to hear that everything was better but as windwalker says -- little better and about the same is surely acceptable to me. I do nebulizer once or twice daily (usually twice) with albuterol followed by saline. Takes me about 30-40 minutes to do that. I'm not a TV person, but I try to do it when there is something on that I might like. Goes fast that way. And every 4-5 weeks I get another flare coming on so I try to get a sample right then and get the analysis so we can see which bacteria is flaring this time. It just keeps going...... but I'm really not "sick" -- unless I don't get started on antibiotics right away. If not, I get to feeling bad. I'm learning to try to nip it in the bud. Just hope I don't become immune to the antibiotics. Always a worry......Mayo's hasn't asked me for 3 sputum tests -- they've been making decisions from just one. I'll be prepared if they ask for three. Jan

REPLY
auntnanny | @auntnanny | Aug 13, 2017
In reply to @cld120 "@auntnanny, my MAC was discovered via a long route, like others too, I suspect. I also..." + (show)
@cld120

@auntnanny, my MAC was discovered via a long route, like others too, I suspect. I also was told I have mild bronchiecstasis. (Irreversible underlying lung disease) I started coughing last November & finally went to my dr at the end of January, 2017. I'd been exhausted the months preceding it, as well. After several abnormal lung x-rays & being treated for pneumonia, I had a CT scan. My dr referred me to a pulmonologist, who did a bronchoscopy. I was only worried about lung cancer (my mom developed it at age 66; I am 59.)

After subsequentally being diagnosed with MAC, I read everything I could find and made an appt to go to the Rochester, MN Mayo Clinic, a great decision!! Just beginning the "Big Three" meds and hoping the Infectious Disease specialist I see at the end of August at the University of Kentucky Medical Center is someone I can work with.

I did not have a good experience with one locally prior to going to Mayo. He seemed quite out of touch regarding MAC & made ~a half dozen totally false statements about it. For example, he said it does not involve fatigue & is not being diagnosed more frequently--it is, especially in the southeast U.S., according to my Mayo dr. Oh yeah, and that he can cure everyone, except those who are non-compliant with their meds! Grrrr...

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windwalker ----- yes, I think that's all we can wish for. Dr. Moua told me upfront they could not cure it but he thought they could manage it. I'm wanting very much to believe that. Jan

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 14, 2017
In reply to @cld120 "@auntnanny, my MAC was discovered via a long route, like others too, I suspect. I also..." + (show)
@cld120

@auntnanny, my MAC was discovered via a long route, like others too, I suspect. I also was told I have mild bronchiecstasis. (Irreversible underlying lung disease) I started coughing last November & finally went to my dr at the end of January, 2017. I'd been exhausted the months preceding it, as well. After several abnormal lung x-rays & being treated for pneumonia, I had a CT scan. My dr referred me to a pulmonologist, who did a bronchoscopy. I was only worried about lung cancer (my mom developed it at age 66; I am 59.)

After subsequentally being diagnosed with MAC, I read everything I could find and made an appt to go to the Rochester, MN Mayo Clinic, a great decision!! Just beginning the "Big Three" meds and hoping the Infectious Disease specialist I see at the end of August at the University of Kentucky Medical Center is someone I can work with.

I did not have a good experience with one locally prior to going to Mayo. He seemed quite out of touch regarding MAC & made ~a half dozen totally false statements about it. For example, he said it does not involve fatigue & is not being diagnosed more frequently--it is, especially in the southeast U.S., according to my Mayo dr. Oh yeah, and that he can cure everyone, except those who are non-compliant with their meds! Grrrr...

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@auntnanny, Jan, I pull double duty too when I nebulize. I am doing it now, both albuterol and saline after. I use this time to respond to this forum.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 14, 2017

@auntnanny, Jan, you are so active, so I know you are getting exercise. I am guessing you eat nutriciously as you are after all a ranch-hand cook. And you live on a large ranch, so you are probably somewhat isolated, and most likely on well water. I feel like you have a lot of 'plusses' in your lifestyle. Just be mindful of breathing in dust, mold, and soil particulate. You should be able to live out your lifespan. You will just have to keep an eye out and take measures to stay infection free for the rest of your life. Hugs!

REPLY
4 replies
auntnanny | @auntnanny | Aug 14, 2017
In reply to @cld120 "@auntnanny, my MAC was discovered via a long route, like others too, I suspect. I also..." + (show)
@cld120

@auntnanny, my MAC was discovered via a long route, like others too, I suspect. I also was told I have mild bronchiecstasis. (Irreversible underlying lung disease) I started coughing last November & finally went to my dr at the end of January, 2017. I'd been exhausted the months preceding it, as well. After several abnormal lung x-rays & being treated for pneumonia, I had a CT scan. My dr referred me to a pulmonologist, who did a bronchoscopy. I was only worried about lung cancer (my mom developed it at age 66; I am 59.)

After subsequentally being diagnosed with MAC, I read everything I could find and made an appt to go to the Rochester, MN Mayo Clinic, a great decision!! Just beginning the "Big Three" meds and hoping the Infectious Disease specialist I see at the end of August at the University of Kentucky Medical Center is someone I can work with.

I did not have a good experience with one locally prior to going to Mayo. He seemed quite out of touch regarding MAC & made ~a half dozen totally false statements about it. For example, he said it does not involve fatigue & is not being diagnosed more frequently--it is, especially in the southeast U.S., according to my Mayo dr. Oh yeah, and that he can cure everyone, except those who are non-compliant with their meds! Grrrr...

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windwalker ----- it really helps to pass the time. Does it take you 30-40 minutes to do it? The first hosing apparatus I had took almost 90 minutes and doing that twice a day was really difficult. Then, my regular doctor said "Oh now, shouldn't take that long and he gave me a different set of tubing". The first was what Mayo's had sold me when I was there so I'[ve always been perplexed as to why they are selling that one. I mentioned it to Dr. Moua (Mayo doctor) and he said definitely to go with the new one. I was fearful that it had to be the longer time or it wasn't working right. Just didn't know. Just saying this in case anyone else is out there with tubing that takes a very long time.

REPLY
auntnanny | @auntnanny | Aug 14, 2017
In reply to @windwalker "@auntnanny, Jan, you are so active, so I know you are getting exercise. I am guessing..." + (show)
@windwalker

@auntnanny, Jan, you are so active, so I know you are getting exercise. I am guessing you eat nutriciously as you are after all a ranch-hand cook. And you live on a large ranch, so you are probably somewhat isolated, and most likely on well water. I feel like you have a lot of 'plusses' in your lifestyle. Just be mindful of breathing in dust, mold, and soil particulate. You should be able to live out your lifespan. You will just have to keep an eye out and take measures to stay infection free for the rest of your life. Hugs!

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windwalker -- no, not well water. it's rural water supply. I don't get enough exercise. I'm suffering with bad knees and one bad hip (which is really hard walking)...... so I'm short on exercise. Barefoot in the house on thick carpet is the easiest on the old hip. I'm working with doctors and therapists currently to try to get better with the hip. Thanks for thinking of me -- nutrition...... yes, -- Ha -- Far too much of it. Jan

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 14, 2017
In reply to @windwalker "@auntnanny, Jan, you are so active, so I know you are getting exercise. I am guessing..." + (show)
@windwalker

@auntnanny, Jan, you are so active, so I know you are getting exercise. I am guessing you eat nutriciously as you are after all a ranch-hand cook. And you live on a large ranch, so you are probably somewhat isolated, and most likely on well water. I feel like you have a lot of 'plusses' in your lifestyle. Just be mindful of breathing in dust, mold, and soil particulate. You should be able to live out your lifespan. You will just have to keep an eye out and take measures to stay infection free for the rest of your life. Hugs!

Jump to this post

@auntnanny Thanks Jan. Well just burst my bubble, hear? I got a giggle from your last sentence!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 15, 2017
In reply to @cld120 "@auntnanny, my MAC was discovered via a long route, like others too, I suspect. I also..." + (show)
@cld120

@auntnanny, my MAC was discovered via a long route, like others too, I suspect. I also was told I have mild bronchiecstasis. (Irreversible underlying lung disease) I started coughing last November & finally went to my dr at the end of January, 2017. I'd been exhausted the months preceding it, as well. After several abnormal lung x-rays & being treated for pneumonia, I had a CT scan. My dr referred me to a pulmonologist, who did a bronchoscopy. I was only worried about lung cancer (my mom developed it at age 66; I am 59.)

After subsequentally being diagnosed with MAC, I read everything I could find and made an appt to go to the Rochester, MN Mayo Clinic, a great decision!! Just beginning the "Big Three" meds and hoping the Infectious Disease specialist I see at the end of August at the University of Kentucky Medical Center is someone I can work with.

I did not have a good experience with one locally prior to going to Mayo. He seemed quite out of touch regarding MAC & made ~a half dozen totally false statements about it. For example, he said it does not involve fatigue & is not being diagnosed more frequently--it is, especially in the southeast U.S., according to my Mayo dr. Oh yeah, and that he can cure everyone, except those who are non-compliant with their meds! Grrrr...

Jump to this post

@auntnanny Hi Jan! Yes, it takes me 30-40 mins to nebulize both meds. If I am in a hurry, I skip the saline and do it when I return home. I need to do that today because I have a dr appt and do not have time. Had short night of sleep, so I did not get up extra early to accommodate that. Will do it when I get back.

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