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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21, 2024 | Replies (9354)Comment receiving replies
Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I haven’t started treatment yet, appt with doc next week. I am 66 & have had shortness of breath for a few years. I was diagnosed with COPD & got progressively worse. I had to really push to get doctors to find the MAC. I don’t seem to have other problems. I am active as much as I can be. I have horses & ride three times a week & I like gardening. I have a stationary bike to ride too. This diagnosis gave me hope of getting over this but as I researched it I got worried, I’m worried about the long term antibiotics. I have hypothyroidism & Hoshimoto’s & went through a 9 month protocol & got that under control. Now I think the treatment for MAC will really mess that all up. I have read a lot of previous posts & learning a lot. I am glad I found this group because I think this treatment is going to be tough.
Replies to "Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I..."
I wouldn't suggest taking non-medical discussions to private message. "Off (medical) topic" discussions are allowed and welcome on Connect. They are the hallmark of a close-knit and well-functioning community. We are more than our diseases and when community members start to share additional information about themselves, it gives the community and its members more dimensions.
The short tangential conversation about art, expression and living our lives was well appreciated by members. Managing chronic conditions like MAC and living well includes things like art, pets, family, travel, walking on the beach, favorite books, mental health, etc.
That's why I appreciate members sharing about the things that contribute to their health and well-being and am excited to re-introduce the discussion thread:
– We are so much more than our disease https://connect.mayoclinic.org/discussion/we-are-so-much-more-than-our-disease/
Click the link and share what contributes most to your health and well-being.
@gaelawree glad to know you wear your mask. Did you ID doctor told you it is not proven it is a successful treatment. Many doctors doesn’t prescribe it anymore only as last ressources because of the secondary effect. If you heart feels good taking the big
3 it should work good. Good luck and keep us posted on how you are doing. Nick
@gaelawree Great attitude!
@gaelawree Hey, no harm done. A little 'off medical' talk is ok. Colleen has pointed out a thread that we can use to share more things other than illness. (Did you see her post?) It is good for bonding. We ARE all more than our disease. Your doctor sounds very much on the ball. Introducing each drug separately to test for tolerance is the correct way to do it. Plus, I like that you are being taught some drainage techniques. Are you also doing the sodium chloride inhalations?
@gaelawree That postural drainage technique looks like it uses gravity. Will you have to build a little ramp like that in the picture? Or will you rig something so that you slope downward?
Haven't heard about sodium chloride inhalation. Can you say more? Thanks
@tdrell Thank you, Terri, that means a lot to me.
@gaelawree I am sorry about your diagnosis of bronchiectasis. I wonder why so many of us have it?
@windwalker Thanks for being our mentor, we really appreciate you and all the help you offer, couldnt do it without you!!!!!!!
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Well said..