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Mentor

We are so much more than our disease....

Posted by Terri Martin, Volunteer Mentor @windwalker, Aug 25, 2017

Hello ladies, and maybe a few gentlemen. The forum is quite, maybe because it is the weekend and we are doing fun things (hopefully). I would like to know what our members are doing outside of giving MAC our attention. I know this group is wise enough to know not to give your whole life over to MAC. So, what is everybody doing that does NOT include illness? (if you are having illness, that is ok to talk about also.)
As for me, I went to happy hour on Hilton Head Island with my hubby and our teacup poodle named Scarlett. We enjoyed a mini pizza and colossol shrimp and an adult beverage. Afterwards, we ran our little pupster across a big lawn on the Broad Bay River. There was a cooling breeze blowing and it was quite nice. The humidity finally broke and the air was breathable. Tomorrow, we will attend a birthday party for a new friend. What's up gang?

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

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 28, 2018
In reply to @colleenyoung "@heathert - how's Mack? How was your summer in New Zealand? We're just getting ready for..." + (show)
@colleenyoung

@heathert - how's Mack? How was your summer in New Zealand? We're just getting ready for the season of sun here in the northern hemisphere. 🙂

@megan123 - Jennifer, did you open up your cottage last weekend, Victoria Day weekend? Will you live there full time over the summer?

And in the US, it's Memorial Day weekend. What's everyone got planned?

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@tdrell, Terri, I was 16 yrs old when I went to Europe on the Concord. I do not recall how many hours I was on it, but the trip wasn't long. We flew out of N.Y. LaGuardia into Heathrow in London. I remember being comfortable onboard. I remember a second story with a spiral staircase. I think it was on that one.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 28, 2018
In reply to @colleenyoung "Recently we had a great tangential discussion in the main thread about art. I'm posting here..." + (show)
@colleenyoung

Recently we had a great tangential discussion in the main thread about art. I'm posting here to bring this topic back to the top of the group.
"We are so much more than our disease..."

Tell me, what contributes to your health and well-being?

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@macjane Good advice Jane. I probably am a little dehydrated.

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tdrell | @tdrell | Jul 30, 2018
In reply to @colleenyoung "Recently we had a great tangential discussion in the main thread about art. I'm posting here..." + (show)
@colleenyoung

Recently we had a great tangential discussion in the main thread about art. I'm posting here to bring this topic back to the top of the group.
"We are so much more than our disease..."

Tell me, what contributes to your health and well-being?

Jump to this post

@windwalker....probably the tobramycin....how are cramps now?tdrell

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 30, 2018
In reply to @colleenyoung "Recently we had a great tangential discussion in the main thread about art. I'm posting here..." + (show)
@colleenyoung

Recently we had a great tangential discussion in the main thread about art. I'm posting here to bring this topic back to the top of the group.
"We are so much more than our disease..."

Tell me, what contributes to your health and well-being?

Jump to this post

@tdrell Hi Terri. Had slight stomach cramps last night after my treatment. The bad cramps prior did not result in diarrhea, so I don't think it was something I ate; but probably was the tobramycin. I am feeling good now. I went to my cardio class today. Thank you for asking. How are you doing?

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cila | @cila | Jul 30, 2018

Hi Terri, just got a call from NJH about the result of my sputum text. I got 40 colonies and intracellulare. They want me send another sputum just to make sure I had the intracellulare. Its make me feel depressed when I do everything they tell me to do. Is this the kind of bacteria that Katherine had? Do you know anyone who has this bacteria? Thanks ! Cila

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1 reply
heathert | @heathert | Jul 30, 2018

@cila Sorry to hear that, I had MAI (intracellulare),went on the big 3, Katherine also had Absessus and then 3 hospital aquired bugs also so please dont worry, everyones situation is different , take care Heather

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 31, 2018
In reply to @cila "Hi Terri, just got a call from NJH about the result of my sputum text. I..." + (show)
@cila

Hi Terri, just got a call from NJH about the result of my sputum text. I got 40 colonies and intracellulare. They want me send another sputum just to make sure I had the intracellulare. Its make me feel depressed when I do everything they tell me to do. Is this the kind of bacteria that Katherine had? Do you know anyone who has this bacteria? Thanks ! Cila

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@cila, Hi. I know that it is disheartening to get the news that there is 40 colonies of anything growing in your lungs. You are in good hands with NJH though. Heather is right, our dear Katherine did not have MAI. She had abscessus mac, and what took her down was the three hospital acquired bacterias. They were: klebsiella, seratia, and bollisolates. She had spent nights in the ICU room with her husband about 4 months prior; and on other occassions. I feel like she may have picked them up there. (Please stay out of hospitals & convelescent homes.) You will have to be diligent with your treatment plan when you are on one. You can do this. I appreciate you keeping me updated, and let me know what they recommend for your treatment. Do you need my help with looking up info on MAI? Sending you cyber hugs.

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