1. < MAC & Bronchiectasis

In shock after MAC diagnosis

Posted by sylvermoon8 @sylvermoon8, Aug 17, 2019

I was being followed for a lung problem for 2 years and finally was to have my last CT in June. But it showed pneumonia. I had had a bad cough a month before, they thought I had pneumonia but chest X-rays indicated no, so I wasn’t treated. So after the CT I had 7 days of an antibiotic. 6 weeks later my next CT showed it had gotten a bit worse and now they mentioned something called MAI. That was last Monday. Tuesday I am getting a bronchoscope and biopsy. I am scared. Especially now that I have read so much about this. I don’t have symptoms except maybe if I talk fast I feel like I had to stop and breath. I don’t know what I am in for. Gosh I am scared just about getting the bronchoscope. My doctor said I could have gotten this from gardening, I did a lot...have been doing it for years. This year we had a new mulch supplier...... I could use a pep talk, if anyone has that for this!!

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sandykayhud | @sandykayhud | Aug 26, 2019
In reply to @windwalker "@silvermoon8, @sandykayhud, @catalin, @marilynk Hi ladies. May I ask what you all did career wise and..." + (show)
@windwalker

@silvermoon8, @sandykayhud, @catalin, @marilynk Hi ladies. May I ask what you all did career wise and what state you live in? I am tracking data for research. Thank you!

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Sorry to take so long in replying. I taught kindergarten for several years. Then I owned and managed a Christian bookstore for 20+ years. I feel like I may have come in contact with my MAC through our hot tub that we used for several years.

REPLY
1 reply
Jennifer | @megan123 | Aug 26, 2019
In reply to @sueinmn "Pseudomonas is another bug which invades compromised lungs and can cause pneumonia. May occur alone or..." + (show)
@sueinmn

Pseudomonas is another bug which invades compromised lungs and can cause pneumonia. May occur alone or in combination with MAC/MAI. It is (generally) easier to treat than MAC/MAI, the course of treatment is usually much shorter, and it (generally) responds to levaquin, doxycycline, and/or inhaled trobamycin. It can also reoccur, and like Terri says, is also often found in yard and garden. Just another one of those things to be aware of if you have bronchiectasis. I wear long sleeves, gloves and an N-95 mask when working in the yard to minimize exposure to both bugs. I can't leave it to my husband, because he also has bronchiectasis, has had pseudomonas (but not MAC) and has really bad allergies. Another commonly-cited source for both bugs is wood mulch (which can also harbor mold spores) so I leave the handling of that to a hired teenager, who also does some of the heavy work in our yard and a lot of the trimming and hauling of brush.

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@sueinmn....I also have psedomonas, mine being much more difficult to treat...tobi doesn’t wrk for me, but Colistin does...depending on your sensitivites as well makes a huge difference and how colonized it is...it is s very dangerous bacteria, and can be difficult to treat, as I’m experiencing...tks for the onfo

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1 reply
irene5 Irene Estes | @irene5 | Aug 26, 2019
In reply to @sandykayhud "Sorry to take so long in replying. I taught kindergarten for several years. Then I owned..." + (show)
@sandykayhud

Sorry to take so long in replying. I taught kindergarten for several years. Then I owned and managed a Christian bookstore for 20+ years. I feel like I may have come in contact with my MAC through our hot tub that we used for several years.

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@sandykayhud Many teachers have been blessed with MAC. I don’t know about you, but I worked in dirty old buildings for 43 years. I did my own cleaning. I don’t think the vents were ever cleaned! K is the best age. They tell you everything and are such sponges. I miss it! Irene5

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 30, 2019
In reply to @sueinmn "Pseudomonas is another bug which invades compromised lungs and can cause pneumonia. May occur alone or..." + (show)
@sueinmn

Pseudomonas is another bug which invades compromised lungs and can cause pneumonia. May occur alone or in combination with MAC/MAI. It is (generally) easier to treat than MAC/MAI, the course of treatment is usually much shorter, and it (generally) responds to levaquin, doxycycline, and/or inhaled trobamycin. It can also reoccur, and like Terri says, is also often found in yard and garden. Just another one of those things to be aware of if you have bronchiectasis. I wear long sleeves, gloves and an N-95 mask when working in the yard to minimize exposure to both bugs. I can't leave it to my husband, because he also has bronchiectasis, has had pseudomonas (but not MAC) and has really bad allergies. Another commonly-cited source for both bugs is wood mulch (which can also harbor mold spores) so I leave the handling of that to a hired teenager, who also does some of the heavy work in our yard and a lot of the trimming and hauling of brush.

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@sueinmn Hi Sue! Just wanted you to know that I appreciate your spot-on comments. You always provide accurate info. to the newcomers. I have been extremely busy with a building roject and helping a dear friend care for two parents with dementia. I feel good knowing that you are here and catch some 'newbies' that I may not get to right away. My appreciation extends to all of you that pitch in daily and keep our network strong. I got my annual test results back from Mayo today. NEGATIVE for all organisms. That makes three yrs free of infection! Yayyyyy!!

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7 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 30, 2019
In reply to @catalin "It is Ethambutol, one of the big three." + (show)
@catalin

It is Ethambutol, one of the big three.

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@catalin Yes.

REPLY
ling123 | @ling123 | Aug 30, 2019
In reply to @windwalker "@sueinmn Hi Sue! Just wanted you to know that I appreciate your spot-on comments. You always..." + (show)
@windwalker

@sueinmn Hi Sue! Just wanted you to know that I appreciate your spot-on comments. You always provide accurate info. to the newcomers. I have been extremely busy with a building roject and helping a dear friend care for two parents with dementia. I feel good knowing that you are here and catch some 'newbies' that I may not get to right away. My appreciation extends to all of you that pitch in daily and keep our network strong. I got my annual test results back from Mayo today. NEGATIVE for all organisms. That makes three yrs free of infection! Yayyyyy!!

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What a great news, @windwalker Terri! Go out and celebrate.

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irene5 Irene Estes | @irene5 | Aug 30, 2019
In reply to @windwalker "@sueinmn Hi Sue! Just wanted you to know that I appreciate your spot-on comments. You always..." + (show)
@windwalker

@sueinmn Hi Sue! Just wanted you to know that I appreciate your spot-on comments. You always provide accurate info. to the newcomers. I have been extremely busy with a building roject and helping a dear friend care for two parents with dementia. I feel good knowing that you are here and catch some 'newbies' that I may not get to right away. My appreciation extends to all of you that pitch in daily and keep our network strong. I got my annual test results back from Mayo today. NEGATIVE for all organisms. That makes three yrs free of infection! Yayyyyy!!

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That is awesome news Terri!! Hip, hip, hooray!

REPLY
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 30, 2019
In reply to @windwalker "@sueinmn Hi Sue! Just wanted you to know that I appreciate your spot-on comments. You always..." + (show)
@windwalker

@sueinmn Hi Sue! Just wanted you to know that I appreciate your spot-on comments. You always provide accurate info. to the newcomers. I have been extremely busy with a building roject and helping a dear friend care for two parents with dementia. I feel good knowing that you are here and catch some 'newbies' that I may not get to right away. My appreciation extends to all of you that pitch in daily and keep our network strong. I got my annual test results back from Mayo today. NEGATIVE for all organisms. That makes three yrs free of infection! Yayyyyy!!

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@windwalker Thanks for the kind words Terri, I'm glad to help when I can. So glad to hear about your results. Keeping my fingers crossed that mine will be negative as well- expect to hear in about 10 days.

REPLY
pfists | @pfists | Aug 30, 2019
In reply to @windwalker "@sueinmn Hi Sue! Just wanted you to know that I appreciate your spot-on comments. You always..." + (show)
@windwalker

@sueinmn Hi Sue! Just wanted you to know that I appreciate your spot-on comments. You always provide accurate info. to the newcomers. I have been extremely busy with a building roject and helping a dear friend care for two parents with dementia. I feel good knowing that you are here and catch some 'newbies' that I may not get to right away. My appreciation extends to all of you that pitch in daily and keep our network strong. I got my annual test results back from Mayo today. NEGATIVE for all organisms. That makes three yrs free of infection! Yayyyyy!!

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@windwalker
Yeah for negative results!!

REPLY
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Aug 30, 2019
In reply to @windwalker "@sueinmn Hi Sue! Just wanted you to know that I appreciate your spot-on comments. You always..." + (show)
@windwalker

@sueinmn Hi Sue! Just wanted you to know that I appreciate your spot-on comments. You always provide accurate info. to the newcomers. I have been extremely busy with a building roject and helping a dear friend care for two parents with dementia. I feel good knowing that you are here and catch some 'newbies' that I may not get to right away. My appreciation extends to all of you that pitch in daily and keep our network strong. I got my annual test results back from Mayo today. NEGATIVE for all organisms. That makes three yrs free of infection! Yayyyyy!!

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@windwalker Wonderful news, Terri! Yipee...

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