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My experience at Cedars Sinai

MAC & Bronchiectasis | Last Active: Dec 5, 2023 | Replies (19)

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@sueinmn

@cynthia69 Oh Cynthia, I am sorry his one statement comparing cholesterol meds to the Big 3 has put you off. He sounds like EXACTLY the doctor I would want on my side with the MAC treatment!

I do want to say something about the "Big 3" treatment for MAC. It is certainly no "walk in the park" but I would not be here today if I hadn't taken the antibiotics back in 2018 and 2019. When I was especially down, one of my friends, a cancer survivor (surgery, chemo & radiation, lost her tongue & more), put it in perspective. She said she understood I felt like "p**p" but it would keep me alive, and that was the important thing. And that when treatment ended I would feel better. Paula was right on both counts! She was also the person who taught me how to cram calories and nutrients into my "everything shakes" which I would sip throughout the day when I had no appetite.

So, now I think about the antibiotics this way - if I had cancer, and needed chemo, would I worry about losing my hair, or would I be determined to try anything to live? Are the Big 3 any different - should I worry about a small chance of serious side effects, or try to knock down the infection threatening my life?

Finally, the "downward dog" suggestion was right on. When I have really stubborn mucus far down in my lungs, I neb then do that pose and huff cough while upside down. It has never failed me. And I do my best airway clearance when I neb before I exercise - the saline loosens it, then the movement moves it - better than Aerobika.
Sue

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Replies to "@cynthia69 Oh Cynthia, I am sorry his one statement comparing cholesterol meds to the Big 3..."

Hi Sue,

I knew I could count on you for a realistic take on my situation. I am not turned off to Dr. Wolf.
It took me 5 hours to go see him. I would go to him if he were closer.

I am switching to someone that was rated advance for treating MAC and did their residency at Cedar Sinai in LA and may know Dr. Wolf.

I am going to take the cocktail in 2024 and follow his advice and your advice. I am hoping to find a more talkative and empathic doctor closer to home to take that journey with.

You are a ray of sunshine in the dark world of MAC.

Thank you for being so loyal to this thread and typing the same info over and over.

Best,

Cynthia 69 Agoura Hills, CA

Sue,
I have started using the downward dog position the past few days after each time I use the Aerobika. It does not seem to make a difference. How long do you stay in the downward dog position?