1. < MAC & Bronchiectasis

My experience at Cedars Sinai

Posted by cynthia69 @cynthia69, Nov 27, 2023

Hi,

I went to see Dr. Wolf today because my first pulmonologist, Dr. May Lin Wilgus at UCLA Westlake CA, does not tell me much.

Dr. Wolf told me a lot and did not beat around the bush. He said my CT scan got worse between January 23 and May 23 and I ought to be on the big 3 by January 2024; otherwise, I could die! He told me he had two people who waited and they are dead now.

He gave me two lung capacity test and said my lung capacity was 60%. He said I have had MAC for years and that if I do not treat it soon I am a dead woman. Told me to go to eye doctor and get my hearing tested, but to not worry about vision or hearing loss. He said he thinks the MAC gave me the bronchiectasis and not the other way around.

He said he thinks I have asthma or COPD does not know which because they act the same. He said he did not think I had an pneumonia. He said I probably got MAC from aspirating water. He said I ought to get tested for silent GERD.

I told him my biggest beef with Dr. Wilgus was she had me go to UCLA for sputum induction that cost me $366. At least he was honest and said she works for UCLA that is why she sent you there.

Oh, by the way, since I have been giving Dr. Wilgus pushback she did get my subspecies from UCLA lab which she initially said was impossible. Dr. Wolf does not care about subspecies.

He talked to me for an hour and was doing good until I said I am depressed and he said "We all have something, I have to take a pill for high cholesterol every day."' How could he compare that to the big 3!

Needless to say I am depressed and disappointed. I won't be going to Dr. Wolf because he is too far from my home and he said even though Dr. Wilgus has no personality, is like cardboard as he put it, he said she is competent.

ULCA my chart is assessable by Cedar Sinai. He will write to her and tell her what he thinks.

So I will try to be like Sue and play nice with Dr. Wilgus

He is in tight with Jewish Health in Denver, Colorado he said and sends people he is not successful in treating there as a last resort.

He told me I don't have to use the Aerobika if I don't want to and he thinks the vest are a waste of time. He recommended 7% saline nebulizer and inhaler before nebulizer of Anaro or Stiolto. He told me to do yoga and downward facing dog!

He was a character. Very different from the ice queen I am going to stick with.

I hope my post was not too harsh. If so, I guess you will edit me.
Sorry.

Cynthia 69 from Agoura Hills, CA

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

Mentor
Sue, Volunteer Mentor | @sueinmn | Nov 29, 2023
In reply to @cynthia69 "Hi Sue, I knew I could count on you for a realistic take on my situation...." + (show)
@cynthia69

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

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Bravo, Cynthia! I know this was a hard decision for you, but sometimes the hard choice is the right one.

Thank you for the kind words - sometimes I do feel like I keep saying the same thing...kind of like being a Mom?

We'll be here for you as you go forward!
Hugs!
Sue

REPLY
cynthia69 | @cynthia69 | Nov 29, 2023

Hi Arlo,

Thank you for you information about Cedars. I am sorry it cost you so much for nothing useful.

I hope that Kaiser is treating you better than Cedars did.

Best,

Cynthia

REPLY
lweirdo1 | @lweirdo1 | Nov 29, 2023

I almost cancelled my appointment because late in the night I got a real bad cold and had a hard time swallowing but my wife said, "take a real hot shower and see how you feel". So glad I did. The doctor was quite amazing and had studied all of my records and he knew more about my MAC journey than I could remember. He kept saying, "we gotta make a plan"! YES that's what I've been waiting to hear for over three years now! He mapped out things for me to try and if they didn't work we'll move on to other things that might. Love this guy and most importantly he gave me new hope and that's the best medicine for me at this time. Thank you for the invaluable suggestion and if it wasn't for this sight I would have never booked a meeting with him. God works in some rather interesting and amazing ways!

REPLY
1 reply
sallyb827 | @sallyb827 | Nov 30, 2023
In reply to @sueinmn "@cynthia69 Oh Cynthia, I am sorry his one statement comparing cholesterol meds to the Big 3..." + (show)
@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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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?

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Nov 30, 2023
In reply to @sallyb827 "Sue, I have started using the downward dog position the past few days after each time..." + (show)
@sallyb827

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?

Jump to this post

2-3 minutes, up to 5 times - if nothing moves by then, I figure it isn't going to. Sometimes stuck is just stuck, sometimes extra water helps, or a brisk walk then downward dog.
Sue

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 30, 2023
In reply to @lweirdo1 "I almost cancelled my appointment because late in the night I got a real bad cold..." + (show)
@lweirdo1

I almost cancelled my appointment because late in the night I got a real bad cold and had a hard time swallowing but my wife said, "take a real hot shower and see how you feel". So glad I did. The doctor was quite amazing and had studied all of my records and he knew more about my MAC journey than I could remember. He kept saying, "we gotta make a plan"! YES that's what I've been waiting to hear for over three years now! He mapped out things for me to try and if they didn't work we'll move on to other things that might. Love this guy and most importantly he gave me new hope and that's the best medicine for me at this time. Thank you for the invaluable suggestion and if it wasn't for this sight I would have never booked a meeting with him. God works in some rather interesting and amazing ways!

Jump to this post

@lweirdo1, I moved your praise of Dr. Wolf to this existing discussion about Cedar Sinai MAC care.
- My experience at Cedars Sinai
https://connect.mayoclinic.org/discussion/dr-robert-wolf-cedar-sinai-los-angeles/

REPLY
cynthia69 | @cynthia69 | Nov 30, 2023
In reply to @cynthia69 "Hi Weirdo, I cannot wait to read your review. I hope you got better news than..." + (show)
@cynthia69

Hi Weirdo,

I cannot wait to read your review.

I hope you got better news than I did.

Cynthia69
Agoura cay

Jump to this post

Hi,

I agree that God works in mysterious ways. I am glad you like Dr. Wolf and that he has given you hope and a plan.

Could you please tell me what he suggested you try first? Was it the big 3 cocktail.

Hoping to hear from you soon and praying for your success.

Cynthia69
Agoura CA

REPLY
cynthia69 | @cynthia69 | Dec 5, 2023
In reply to @lweirdo1 "Going to see him in the morning. Thanks for the heads up!" + (show)
@lweirdo1

Going to see him in the morning. Thanks for the heads up!

Jump to this post

Hi ,

What is the plan?

Are you going to take big 3?

Cynthia 69

REPLY
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