1. < MAC & Bronchiectasis

Physician recommendation - Arizona Mayo Clinic

Posted by joan912 @joan912, Sep 8, 2017

My husband has been diagnosed with Mycobacterium Avium Complex as well as bronchiectasis. He is interested in getting a second opinion from a physician at the Mayo Clinic. I would like to go to the Arizona branch of the clinic (much closer to me in San Jose, CA). Has anyone gone there and, if so, do you have a recommendation for a particular physician? It seems that the Rochester, MN branch may be more applicable to dealing with Pulmonary diseases, so I may need to change my tact. If so, are there any recommendations for the Minnesota branch for physicians.

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lindam272 | @lindam272 | Nov 25, 2017
In reply to @lindam272 "@windwalker, Terri, It would be too difficult financially for me to take time away from work,..." + (show)
@lindam272

@windwalker, Terri, It would be too difficult financially for me to take time away from work, pay for plane, hotel, meals, etc to visit a clinic outside of AZ. I am interested in knowing what bug I have myself! I got pneumonia while in the hospital, but I don't think it's that. I was on a ton of antibiotics while there, so I'm not sure any bug could have lived through that! My CF doc put me on Amoxi Clav last week which seemed like it was helping, but not sure now. I still have a week to go so will finish that up and wait for the sputum culture to come back and see what we're dealing with. I do the 2xday nebulized saline treatments along with the Aerobika. Actually, my CF doc told me to do additional treatments for the next 2 weeks, so I've been doing 3 saline treatments a day and then I use the Aerobika by itself before bed, just to get anything else up that may be lurking in my lungs. I will be doing the saline treatments the rest of my life. It's so discouraging. I was doing so well and feeling good and strong there for awhile. I will get there again. It's a process...

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@oldkarl - Who did you see in Tucson? Was there a specific doctor you liked there? Linda

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 26, 2017
In reply to @oldkarl "@joan912 Hi, Joan, there are a few good docs at AZ. However, do not let them..." + (show)
@oldkarl

@joan912 Hi, Joan, there are a few good docs at AZ. However, do not let them con you into a total body workup. I went there to sort out my Amyloidosis, which I already knew I had in some form. They told me I had to go through the whole car wash instead of just cleaning the headlights. I wasted at least 15,000 , then, in the last few days I was there I finally saw a doctor they said was an expert but he had no clue. Then they claimed I owed them more money and were going to turn me to collections, but then they found out it was their own terrible bookkeeping system. If you can by any means, go the Rochester.

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@joan912, I think it is a good idea to keep that appt. Many people are getting turned away because of patient overload at the Mayo Clinics.

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joan912 | @joan912 | Nov 26, 2017
In reply to @oldkarl "@joan912 Hi, Joan, there are a few good docs at AZ. However, do not let them..." + (show)
@oldkarl

@joan912 Hi, Joan, there are a few good docs at AZ. However, do not let them con you into a total body workup. I went there to sort out my Amyloidosis, which I already knew I had in some form. They told me I had to go through the whole car wash instead of just cleaning the headlights. I wasted at least 15,000 , then, in the last few days I was there I finally saw a doctor they said was an expert but he had no clue. Then they claimed I owed them more money and were going to turn me to collections, but then they found out it was their own terrible bookkeeping system. If you can by any means, go the Rochester.

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I did reschedule the appointment for Feb with Dr. Aksamit. Hopefully that will go well. Also, I've set up an appointment with another doctor in Kaiser, who appears to have more experience with bronchiectasis.

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pkayh | @pkayh | Jan 10, 2018
In reply to @dmarks "I am a current patient of Dr. Kasperbauer at NJH and am wanting a second opinion..." + (show)
@dmarks

I am a current patient of Dr. Kasperbauer at NJH and am wanting a second opinion and I live in CA. Do you have any suggestions, maybe the Mayo clinic in Arizona?

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I would like to know what treatment you were given, if you don't mind .

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