1. < MAC & Bronchiectasis

MAC nodules

Posted by bibes @bibes, Jul 22, 2019

Hi, everyone. Hope you are having a good day. I thought I knew almost everything about the MAC disease was diagnosed with five years ago.
Six months ago nodules were found in my lungs. I am having another catscan in a few weeks. I haven't seen my pulmonologist since them.
I am 85 and have gotten more and more tired since that last catscan and shorter of breath. 'But still walk 2 miles every day. My questions are this:
Does everyone with MAC get nodules? What are your experiences with this nodule thing? Thank you so much for any information. Elizabeth

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

sylvermoon8 | @sylvermoon8 | Aug 18, 2019
In reply to @fdixon63 "Hi gaylewroc. I was at Emory last Friday and it was an awesome experience. Left with..." + (show)
@fdixon63

Hi gaylewroc. I was at Emory last Friday and it was an awesome experience. Left with so much information and understanding of my conditions. I felt such relief just dealing with someone who actually knows about MAC and bronchiectasis. Thank you for reaching out to me and sharing with the Atlanta location info. One important thing is to let all my doctors know I am not to take Azithromycin for any other condition because it is the only med that can really have an effect of MAC.

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@fdixon63 I am new here. Where is Emory?

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1 reply
sylvermoon8 | @sylvermoon8 | Aug 18, 2019
In reply to @sounder27 "Chattey2. What is B X!" + (show)
@sounder27

Chattey2. What is B X!

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Yes I wondered that too.

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sylvermoon8 | @sylvermoon8 | Aug 18, 2019
In reply to @bibes "I am not coughing up anything. I live in Houston (I am really a Californian but..." + (show)
@bibes

I am not coughing up anything. I live in Houston (I am really a Californian but that's another story.). I have just gotten pretty short of breath and
tired. Maybe the nodules haven't grown since 6 months ago. I hope I don't have to have the bronchoscope thing. The funny thing is my
mother was the first person ever to be bronchoscopes in the early forties. She had tb and it saved her life. They put some sort of heat
eight into lungs. At least that's how I remember it. She was in a sanitarium for three years.
I will let you know what happens after my upcoming cat scan (and I know about having too many of them). Thank you for your advice. I value
your counsel. Bibes

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@bibes just read this note of yours. I’m having a bronchoscope Tuesday......is it that bad? I hope not.

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fdixon63 | @fdixon63 | Aug 18, 2019
In reply to @sylvermoon8 "@fdixon63 I am new here. Where is Emory?" + (show)
@sylvermoon8

@fdixon63 I am new here. Where is Emory?

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Emory Health Care St. Joseph's Pulmonary Dept. in Atlanta, GA. Scheduling number is 404-251-1700. They said you aren't required to be referred but usually are. Best of luck with everything. It is a real learning experience and knowledge is power.

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sylvermoon8 | @sylvermoon8 | Aug 21, 2019
In reply to @chattey2 "I think many pulmonologist are clueless when it comes to BX. I had to demand sputum..." + (show)
@chattey2

I think many pulmonologist are clueless when it comes to BX. I had to demand sputum cultures and then when Dx with Mac and several bacteria’s, he tells me the cure is worse than the Desease. Finally, when a cat scan identified BX ordered from a cardiologist, he passes me to an ID. I now have my first white sputum in 3 yrs

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I’m new. What is BX?

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1 reply
irene5 Irene Estes | @irene5 | Aug 21, 2019
In reply to @sylvermoon8 "I’m new. What is BX?" + (show)
@sylvermoon8

I’m new. What is BX?

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BX is the abbreviation for biopsy.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 24, 2019
In reply to @fdixon63 "Hi Terri, I'm newly diagnosed MAC / atypical TB / Bronchiectasis earlier this year. The pulmonary..." + (show)
@fdixon63

Hi Terri, I'm newly diagnosed MAC / atypical TB / Bronchiectasis earlier this year. The pulmonary doc put me on Azithromycin, Ethambutol and Rifampin all on an empty stomach in the morning. I was hanging in there for awhile but after 6 weeks my husband had open heart surgery and I really got off track with losing weight. I've always been thin but with the stress and anxiety associated with his surgery really did me a trick. My follow up appt. with the pulmonary doc ended with him saying I would need to stop all the meds--that I might not be able to tolerate the treatment. His plan at the time was to start me back on the meds one at a time to see if one could be pin pointed as to one that was affecting my appetite. When I went back he said NO--All meds or nothing. He then said, if you don't get your sinus straightened out I won't be able to do anything for you. Saw ENT doctor and now on second round of a different antibiotic and prednisone. My confidence is shaken with pulmonary doc but not sure how to go about finding another one in Montgomery, Al area to go to. I heard it is very difficult to even get in the group here and would go to Birmingham if someone there is good. I read the treatment you did and was very uplifted by the success you had. I'm 73 and just don't know what the future holds. My doctor has never given me a single piece of literature about my disease and was so glad someone put me onto the Mayo Connect. Do you have any suggestion on how to search out a doctor in this area who I might be more experienced that this doc seems to be. Thank you so much. I have learned an enormous amount just this week of joining Mayo Connect. Have a blessed day.

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@fdixon63 Hi. You can go to the http://www.ntminfo.org site for a list of mac/ntm specialists by state.

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healthybon | @healthybon | Jul 20, 2023
In reply to @janovr "Dr. Swenson was my doctor before I moved to Florida! He was the first speaker at..." + (show)
@janovr

Dr. Swenson was my doctor before I moved to Florida! He was the first speaker at our Support Group that met quarterly at Emory. Love him!

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Janovr,

I have my first visit with him today. Wish me luck! I have a lot of questions for him. I hear he’s wonderful! Bon

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healthybon | @healthybon | Jul 20, 2023
In reply to @fdixon63 "Hi Terri, I'm newly diagnosed MAC / atypical TB / Bronchiectasis earlier this year. The pulmonary..." + (show)
@fdixon63

Hi Terri, I'm newly diagnosed MAC / atypical TB / Bronchiectasis earlier this year. The pulmonary doc put me on Azithromycin, Ethambutol and Rifampin all on an empty stomach in the morning. I was hanging in there for awhile but after 6 weeks my husband had open heart surgery and I really got off track with losing weight. I've always been thin but with the stress and anxiety associated with his surgery really did me a trick. My follow up appt. with the pulmonary doc ended with him saying I would need to stop all the meds--that I might not be able to tolerate the treatment. His plan at the time was to start me back on the meds one at a time to see if one could be pin pointed as to one that was affecting my appetite. When I went back he said NO--All meds or nothing. He then said, if you don't get your sinus straightened out I won't be able to do anything for you. Saw ENT doctor and now on second round of a different antibiotic and prednisone. My confidence is shaken with pulmonary doc but not sure how to go about finding another one in Montgomery, Al area to go to. I heard it is very difficult to even get in the group here and would go to Birmingham if someone there is good. I read the treatment you did and was very uplifted by the success you had. I'm 73 and just don't know what the future holds. My doctor has never given me a single piece of literature about my disease and was so glad someone put me onto the Mayo Connect. Do you have any suggestion on how to search out a doctor in this area who I might be more experienced that this doc seems to be. Thank you so much. I have learned an enormous amount just this week of joining Mayo Connect. Have a blessed day.

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My pulmonologist in Georgia knew nothing about our disease. Most of them don’t. I hope you were able to get some good help. Bon

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healthybon | @healthybon | Jul 20, 2023
In reply to @gaylewroc "Hi! I'm glad I saw this post! I live in Hoover Al, the Birmingham area. I..." + (show)
@gaylewroc

Hi! I'm glad I saw this post! I live in Hoover Al, the Birmingham area. I have not found any Doc's in Birmingham that really know how to treat this. I had a Pulmonologist that sent me to an infectious disease Doc. We did the triple drug therapy for 2.5 years and infection was still active. At this point they were throwing up their hands..I got on Google and looked up Mayo. I was planning on Mayo in Jacksonville...then on this group, someone mentioned a specialist in Atlanta, a lot closer for me than Jacksonville.
This is my new Doc:
Dr. Colin Swenson, Emory at St.Joseph's
Pulmonary and Critical care medicine.
5673 Peachtree Dunwoody Rd.
Suite 502
Atlanta, GA 30342
404-251-1700
Fax 678-843-6870
He specializes in Bronchiectasis and MAC!!!!
You should be a lot closer to Emory. They are wonderful!! You will need a referral from a Doctor and he's pretty booked up but if you are really ill tell the person scheduling you and they will work to get you in sooner. They did that for me as I needed medication and had no Doc!!
He sees many "distance " patients. I've seen him twice so far and it's been a blessing.

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Hi Gay,
I’m going to see Dr Swenson for the first time today. I live in Georgia!

I’ve already been to NJH. THIS IS ALL NEW FOR ME IN THE PAST YEAR.

How are you doing? Is dr Swenson helping you?

Do you ever get out of breath.

Regards, Bon

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