1. < MAC & Bronchiectasis

New Diagnosis of MAC/MAI & I'm scared

Posted by sueinoregon @sueinoregon, Sep 10, 2018

Hi, I am new to this site. I just got the results of my broncoscopy a week ago. First I was told I had Staph Aureus in my lungs & was put on Levaquin X 10 days. OK, Now she tells me I had MAI & I think the other one is MAC. Anyway, My pulmonologist said we are waiting for the sensitivity test to see if the bacteria in my sputum are sensitive to the antibiotics....or not....since now some strains are resistant. My name is Sue from Oregon and I am 61 years old with Sjogren's Syndrome, Rheumatoid Arthritis, Bronchiectasis, and now THIS. My RA & bronchiectasis are extensive with a lot of coughing and I am on a biologic immunosuppressive drug, infusion, for the RA. I read several posts at this site, looked up the side effects of the 3 meds my pulmonologist said she will put me on, scheduled an eye and hearing exam. This is scarey!!!! I'm already weary of my life having been turned upsidown in the last 4 years with my health struggles. (On SS disability now) I talk with a clinical psychologist every other week & she is helpful. Is it really helpful to talk about it online? Or does it just make one ruminate about it all the more? I'm not sure which it is. Please let me know if it has helped you cope, or not. Thanks.

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

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 10, 2018
In reply to @flib "@ Terri. I lay off the saline for a day and just once this evening. It..." + (show)
@flib

@ Terri. I lay off the saline for a day and just once this evening. It did help the coughing. So, next time I'll no sooner to give it a rest.

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@flib Great!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 10, 2018
In reply to @flib "I got it back for a few hours. I think I'll sleep tonight and have a..." + (show)
@flib

I got it back for a few hours. I think I'll sleep tonight and have a good day tomorrow. Glad you're out of the fog. Flib

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@flib I had a pretty good day today. I ran a bunch of errands, including an hour long wait at DMV. I got a lot done and feel good about that. Extra rest was key. Hope you get lots of good sleep tonight for your good tomorrow.

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1 reply
Jo Ann K | @jkiemen | Oct 11, 2018

@hydrang3a I think the anxiety is almost as bad as the MAC

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Flib | @flib | Oct 11, 2018
In reply to @windwalker "@flib I had a pretty good day today. I ran a bunch of errands, including an..." + (show)
@windwalker

@flib I had a pretty good day today. I ran a bunch of errands, including an hour long wait at DMV. I got a lot done and feel good about that. Extra rest was key. Hope you get lots of good sleep tonight for your good tomorrow.

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I was also at the DMV. Waited a long time but I didn't mind.Just sat and rested and watched humanity. I'm having a good morning...rare.

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1 reply
heathert | @heathert | Oct 17, 2018
In reply to @shooei "Thanks so much for the replies!! @flib, I think you're right, long lungs is probably not..." + (show)
@shooei

Thanks so much for the replies!! @flib, I think you're right, long lungs is probably not a compliment, but it did make me laugh. Sounds like sticking with the 3% is probably good for me. I haven't posted here much, but I want to say what a great place it is to come and gather encouragement and information. I am very embarrassed to say I struggle with health anxiety, and coughing up blood just sends me into that fear - even though I know it is just sometimes a symptom of my MAC, I can't seem to make my anxiety fully accept that. Same way with the fatigue sometimes, I'll think something else must be horribly wrong and I'm dying and then later in that same day I can feel better, get up and accomplish things and decide I'm probably not dying after all. What a hot mess!!!

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Hi @shooei I know how you feel, dont be embarrassed, I also have bad health anxiety and it is not uncommon so dont worry, Know the ups and downs so well. Lots of us on this site have struggled with mental health over MAC but have become better over time so hopefully you will to, MAC is so complicated especially when we are anxious. Take care Heather

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 17, 2018
In reply to @flib "I was also at the DMV. Waited a long time but I didn't mind.Just sat and..." + (show)
@flib

I was also at the DMV. Waited a long time but I didn't mind.Just sat and rested and watched humanity. I'm having a good morning...rare.

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@flib Ah, the fine art of 'people watching'.

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irene5 Irene Estes | @irene5 | Nov 6, 2018
In reply to @papillion "I have bronchiectasis two year that I know. On symbicort doing great coughing very little. Doctor..." + (show)
@papillion

I have bronchiectasis two year that I know. On symbicort doing great coughing very little. Doctor did sputum and I have MAC he said they go hand and hand. He wants me to start the thre antibiotic for over a year. Please I am so afraid. Help

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The decision to take the meds is your decision. However, MAC usually does not go away on its own and gets progressively worse over time. In my opinion it is better to take the Big 3 when you are relatively healthy instead of waiting. I waited because of my fear, and that was not a good choice for me. Everyone reacts differently to them - everyone has his/her own journey. If you can’t tolerate seven days, you can do three, and if you can’t tolerate a particular med, it can be changed. This forum has been a Godsend for me and many others. We are all here for you, and Terri our mentor is wonderful. Good luck to you.

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papillion | @papillion | Nov 6, 2018
In reply to @papillion "I have bronchiectasis two year that I know. On symbicort doing great coughing very little. Doctor..." + (show)
@papillion

I have bronchiectasis two year that I know. On symbicort doing great coughing very little. Doctor did sputum and I have MAC he said they go hand and hand. He wants me to start the thre antibiotic for over a year. Please I am so afraid. Help

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Thank you If can’t tolerate one meds it can be changed thanks to irene5

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Jo Ann K | @jkiemen | Nov 6, 2018
In reply to @papillion "I have bronchiectasis two year that I know. On symbicort doing great coughing very little. Doctor..." + (show)
@papillion

I have bronchiectasis two year that I know. On symbicort doing great coughing very little. Doctor did sputum and I have MAC he said they go hand and hand. He wants me to start the thre antibiotic for over a year. Please I am so afraid. Help

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@papillion I am almost at my one year mark of taking the Meds. So far am managing. I have a schedule now and think I can get to the full 18months my Pulmonologist was hoping to reach.

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papillion | @papillion | Nov 6, 2018

I have bronchiectasis two year that I know. On symbicort doing great coughing very little. Doctor did sputum and I have MAC he said they go hand and hand. He wants me to start the thre antibiotic for over a year. Please I am so afraid. Help

REPLY
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