New to MAC and considering treatments options: What did you do?

Hi Rick,

Thank yo for your prompt reply. I have Federal Blue Cross which has been pretty good. I will look into part B Medicare.

I wrote to Cedars to see if they do the subspecies and load analysis since UCLA does not.
I live close enough to go to Cedars.

I looked at the US news report and my pulmonologist in on it! People love her.

I may have to go to see someone at Cedars I am out in the suburbs.

Best,

Cynthia69

Hi,

I made an appointment at cedars in La with dr. Robert Wolf, pulmonologist. Do you know him?

I am unhappy with my UCLA pulmonologist in Westlake. She is very uncommunicative.

Thanks

Cynthia

Wow I don’t know him. Maybe I should!

Get the AerobiKa and reusable aeroclipes nebulizer equipment. You must boil this equipment for 10 minutes after use to destroy the MAC, pseudomonas and other bacteria. Nebulize twice daily followed by air way clearance exercises. On Facebook look up Lung Matters. This has an incredible amount of information which is evidence based treatments for bronchiectasis patients with MAC etc . We are our own patients advocates when it comes to our health. Never stop searching and learning about our disease and treatments. Find a pulmonologist who specializes in bronchiectasis/MAC etc. many pulmonologist treat us like COPD patients and the inhalers with steroids can cause more serious lung problems. This is why you need the care of an expert.

Melinda, It may be my oppositional nature, but when I read, "...You must boil this equipment for 10 minutes after use to destroy the MAC..." I must respectfully disagree.

I am following the protocol laid out by my ID doc - wash thoroughly daily and boil weekly. MAC is slow to grow, and pseudomonas and other bacteria respond well to soaking & brushing. So weekly boiling has worked for me for 4 years now with no antibiotics and no reinfection.

As for the using the Aeroeclipse, choice of a nebulizer is a very individual thing. I have probably tried one of everything on the market and settled on a much simpler reusable & boilable one. I found the Aeroeclipse slow to use and fiddly to clean. The same with the Aerobika, I do prefer it to the Acapella, but my daughter is the opposite.

You are correct that we must each find our own path with this disease, and I am glad you found a site that is helpful to you. But I will repeat that no two bodies, lives or personalities are alike, and there is no one formula or "one size fits all" approach to living with Bronchiectasis and MAC. What works for one person is not necessarily the best choice for another.

And of course, ideally everyone should have a pulmonologist who specializes in MAC and Bronchiectasis. Unfortunately, in our large country, with geographic limitations and constraints from various insurance policies, these experts are out of reach for many people. And many of our members are outside the US, which causes its own set of complications.

That is why our support group on Mayo Connect is so important. We spend many hours educating one another, so people can choose to change doctors, educate themselves, and bring new ideas to their accessible doctors.

Also, I will point out that even though inhaled steroids are generally a bad idea for people with Bronchiectasis, and can carry an increased risk of infection, they do have a place in treatment of some of us - especially those who have asthma or COPD as well as Bronchiectasis. That is why, as a member and mentor, I try to never say "Never"

Have you been fortunate enough to find a pulmonologist or ID doc who is expert in treating Bronchiectasis and MAC?
Sue

Just booked to see him as well. He's taking appointments in late November but I'm hopeful sooner than later!

Hi,

Who is your pulmonologist now? I live in Agoura, CA and see Dr. May Lin Wilgus at UCLA Westlake, CA.

I noticed most people on the forum do not name their doctors. I am going to see Dr. Sujay Dutta who is an infectious disease specialist in Thousand Oaks, CA

My main problem with Dr. Wilgus is she does not volunteer any information.

Everything I know so far I learned myself. This group is invaluable.

Good luck to us with Dr. Wolf.

Cynthia69

Hello I also go to Cedars Sinai in LA. I have been going there since 2021 and have adored both of my Doctors. My pulmonary doctor is Doctor Zaman and my infectious disease doctor is Dr. Zakowski. Both are great. I make a day of it and see both doctors and do my breathing test at the hospital on the same day. I drive about 45 miles one way to get there from home. I have been very happy with them. It is a good thing that I found them because the pulmonary doctor I was seeing never did anything for me and never advised me about airway clearance. The doctors at Cedars I think saved my life by getting me on airway clearance and ordering my vest for me which has made a big difference, I really agree that the doctor makes a world of difference in how you’re treated and how you feel. I hope that your experience will be just as good as mine.

Hi,

Thank you very much for your answer. I am happy that you like your doctors.

Is Cedars able to tell you your subspecies and the load?

Do you go to pulmonary rehab? I found a place in Tarzana called Valley Comprehensive Outpatient Rehab Facility that does pulmonary rehab. I hope to learn the huff technique, the postural stuff and anything else the doctors do not have time to teach each patient.

I hope that I will like Dr. Wolf. He has a lot of experience with Bronchiectasis his bio says.

Thank you again for your reply,

Best,

Cynthia 69

Yes I do have a specialist at Mayo whom I’ve been seeing since 2020. Prior I had a pulmonologist who treated me for COPD and diagnosed me with bronchiectasis in 2018. He never recommended sputum samples and or treatments. As my lung condition worsened I had an appointment with National Jewish Heath but canceled due to Covid. I then found a specialist at Mayo. I’ve had to learn about my disease and available treatments from different sites. I agree that what is effective for one person may not be for another. I too have had to take steroids on occasion and acknowledge that sometimes they are necessary. The “Lung matters “site that I have been following are evidence based treatment recommendations. For example, use of pall filter for showering, boiling drinking water and boiling reusable equipment after each use for minimum of 10minutes and adding additional minutes for x amount of feet above sea level. They have many other recommendations/guidelines . I do agree that treatment plans should be tailored to individual needs as many of us have additional illnesses that alter our plan of care. I looked at these guidelines as additional safeguards if one chose to use them. From what I’ve read, the guidelines were evidence based outcomes from National Jewish Health, Mayo Cliniic and a few other sites.. I thank you for your experience and views. After rereading my post, I realized “must “ was not appropriate as recommendations or guidelines are individual choices. I thank you for input and objective information.