Special announcement – Introducing the New MAC & Bronchiectasis group

Hi everyone,
The number of members talking about MAC/MAI/NTM and Bronchiectasis has grown so much that it was time to move the discussions out of the Lung Health group and into a group of your own.

I invite you to:

In the MAC group, you’ll find all your messages, discussions and of course the people you’ve been talking with like Katherine, @katemn, Patient Mentor and the rest of the gang:
@128128terry11t @annie112 @apportee, @bboxer @boomerexpert @bruce668 @cila @cathyt @chinasmom @coylemel333 @cowboy1997 @david1952 @del @digmeme @elaine @flib @fransky, @heathert @hopeful33250 @imeehaigt @janovr @jenblalock @justjanet @jillnc @jms7 @jewel8888 @josephene @judyem @katiemknor @kaystrand @laneyk @liliane @lindam272 @lynnettehuler @marier @margaretg @mayoclinicseeker @maryjo2sell @melissa23 @mimi68 @nelisabeth @Paula_MAC2007 @pfists @pamelasc1 @reneeg @philomena @rosemarya @shirleymac @sophie1019 @suzieapples @tdrell @tutti @windwalker @skinny @pal131 @dwh @dt14145 @dixer @dianeray @ruhdesb @mmteach @lauralynn

Hop on over to the new group.

We’ve graduated! Don’t know if that’s a good thing or a not so good thing… Either way we have each other and our very own wing!

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@boomerexpert

We’ve graduated! Don’t know if that’s a good thing or a not so good thing… Either way we have each other and our very own wing!

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I vote for it being a good thing. 🙂

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@128128terry11t @annie112 @apportee, @bboxer @boomerexpert @bruce668 @cila @cathyt @chinasmom @coylemel333 @cowboy1997 @david1952 @del @digmeme @elaine @flib @fransky, @heathert @hopeful33250 @imeehaigt @janovr @jenblalock @justjanet @jillnc @jms7 @jewel8888 @josephene @judyem @katiemknor @kaystrand @laneyk @liliane @lindam272 @lynnettehuler @marier @margaretg @mayoclinicseeker @maryjo2sell @melissa23 @mimi68 @nelisabeth @Paula_MAC2007 @pfists @pamelasc1 @reneeg @philomena @rosemarya @shirleymac @sophie1019 @suzieapples @tdrell @tutti @windwalker @skinny @pal131 @dwh @dt14145 @dixer @dianeray @ruhdesb @mmteach @lauralynn

Thank you Colleen for the recognition of making us our OWN little corner of the world .. that Mayo sees us as such a supportive and helpful community that it was felt we “deserved” the recognition of having our OWN Group!! It took time, effort and energy for Colleen to create this .. but we thank her for the recognition of the achievements of our community toward working together to create what has been I understand “the longest running and most active’ of all the Groups!

This has been achieved through a Group effort of caring .. support .. helping each other! We can be proud of ourselves! Not only for the recognition by Mayo Clinic .. BUT ALSO .. because now it will be easier for new people to find us on Mayo Clinic Connect! Take a look : https://connect.mayoclinic.org/groups/ .. alpha .. we have our OWN little corner/Group now! Looking Good! Hugs to all! Katherine

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Hi @katemn, Congratulations to you and all of the wonderful members of your group. While I don’t have the disorder that so many of you share, I always read with interest your posts and am amazed at how supportive and helpful you all are with each other. You deserve to have your own little corner of the world! Teresa

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Thank you Teresa, what a nice thing to say! I really am proud of our little community .. just can’t beat the caring and support they radiate! Katherine

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I would like to join group please

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@lp8

I would like to join group please

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Welcome! You are here, pull up a chair and join the conversation. 😁

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Does anyone know of people who have MAC, and bronchietisis who has not done antibiotics? I have both and only do vest and 3%sodium chloride. Other health issues limit my ability to take those drugs. I liked to know what to expect.

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Like you, I too share a bronchietasis/MAC diagnosis since 2017, and did not start any treatment because of severe allergies to antibiotics. Like most, there were days when you felt off, but could function at a reduced rate. In November 2020 developed pneumonia, was hospitalized for three weeks, two in ICU where I spent nine days on a ventilator because oxygen levels dropped way low, as well as having carbon dioxide buildup from an inability to get air out of my lungs. When released, felt better than in years. As months went on, still feeling about eighty percent, but not as good as previously. Still have off days (weeks) but get through. The choice was to treat lungs with nebulized atrovent for lungs, and ignore MAC for now. The cells may just be happy living there without causing issues. Watching and waiting, doing regular CT scans, and praying each day. Hope this helps you.

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That's all we can do sounds like you have a good attitude .I try and keep my chin up. Only problem I have is EVERY DOCTOR I talk to says thears no cureing damaged lung tissue C O P D WHY is it such an impossible task? I thought stem cell might be a start but my doctor says that's snake oil well back to my lord and SAVIOUR JESUS THANK YOU FOR READING THIS

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@kozmo

That's all we can do sounds like you have a good attitude .I try and keep my chin up. Only problem I have is EVERY DOCTOR I talk to says thears no cureing damaged lung tissue C O P D WHY is it such an impossible task? I thought stem cell might be a start but my doctor says that's snake oil well back to my lord and SAVIOUR JESUS THANK YOU FOR READING THIS

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There is stem cell and other research ongoing to work on reversing COPD, but it is in very early stages.

I believe that we will see advances, but we must remember 2 things –
Sound research and treatment takes many years and much money, along with well-designed study, review, and implementation. For every new treatment that comes to market, there are hundreds of theories that fail to produce in the end.
And with COPD, it is not just a matter of lung damage, but also the cardiovascular system, so sometimes treating one doesn't help the other. That makes it exceedingly complex to tackle.

I wish you well in your journey with COPD. Are you working with a doctor or team of doctors to minimize your symptoms and stay as healthy as you can?
Sue

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