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My experience at Cedars Sinai
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
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I can empathize with you on your first doctor. Don't feel bad about stating how she treats you. I too am stuck with someone whom I've been told is competent, but has not exhibited medical knowledge regarding MAC and it's treatment as competent, as well as treating me with scorn and disdain. I'm glad you found someone to "back you up" and hope for better times for you.
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1 ReactionI am so sorry that you have had such difficulty with your first Dr. The second Dr. is really scary too in telling you that you are going to die. If at all possible try to get to the National Jewish Health Center.
What did the sputum results show?
Yes, it is depressing and I have to push myself daily.
Sending you a big hug!
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1 Reaction@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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7 ReactionsGoing to see him in the morning. Thanks for the heads up!
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1 ReactionHi Weirdo,
I cannot wait to read your review.
I hope you got better news than I did.
Cynthia69
Agoura cay
This is a list of the best MAC doctors
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1 ReactionHi @cwak,
Thanks for the empathy. It is rare to receive it in this world. I am switching doctors and going to Dr. Miriam Merchant. She is in the same office with Dr. Wilgus at UCLA Westlake, CA. I know a man for many years who recommended her and she is on the list I posted recently with MAC experts. She is in the advanced category and did her residency in pulmonary at Cedar Sinai in Los Angeles so she may know Dr Wolf.
I am on the waitlist to see her otherwise not until Feb 2, 2024.
Thanks again for empathy. Only people on this thread understand what confusion this is.
Cynthia 69 Agoura Hills, CA
Hi Sally,
Sputum results showed MAC 3 times. I am probably going to take the cocktail in 2024.
I switched doctors hoping to find one who is more talkative and more empathic.
I agree with acwal that they look at me with scorn and disdain if I ask a question.
Thank you for the big hug. Sending one back your way.
Cynthia 69 Agoura Hills, CA
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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5 ReactionsI am with Kaiser and went to Dr. W for a second opinion. I had high hopes but unfortunately I was less than impressed by the care Cedars provides. Dr. W asked lots of questions, took notes and was cordial enough.
He recommended a research study for BE to reduce inflammation. I told him I was not interested in the Big 3. He could not remember the details of the study. I was told that I'd be called that day with the info. No call. No follow up. I called a week later and the front desk was incredibly clueless, although I explained the situation thoroughly. I finally was switched to a research assistant who told me he'd follow up with within the week. No call back. No follow up. I called again about a week later and he told me about a study that had nothing to do with what Dr. W described. Apparently he did not read my chart notes. This was the worst experience ever. And... the visit charge was over $900. Thank goodness they allowed for a 40% reduction if you pay the same day. I won't be returning to Cedars any time soon!
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