MAC - To treat or not

No apology necessary. Thanks for the information. I am being recruited socially by great friends to join them just NW of Phoenix but I don't want to end up in a place that is worse for treating this condition than where I currently live. Thanks again.

Thanks for the explanation. It would be sort of like holding up a whole lung. From the outside you see nothing but if you could open it up like a book then you would see "scooped" out areas or holes. Thanks

I think I misled you somewhere. Sorry. I have not been diagnosed with MAC. When I brought up the possibility the doctor just brushes off the idea of me possibly having MAC because in his opinion most treatments for MAC fail and most people can't tolerate the treatment. I don't think he even realizes multiple ways to treat it, i.e. daily or 3 times a week.

I live in greater Phoenix six months a year. I was diagnosed by my pulmonologist in NH ( but I live 200 miles away in Maine). I was refered to NJH by a friend in Denver (also a snow bird in Az). Before committing to the travel cross country from Maine to Az each year I contacted Mayo Clinic in Phoenix. They told me they do NOT treat bronchiectasis. They specialize in cancer treatment. They told me to go to Rochester NY or Fl if I wanted a Mayo Clinic . Did they start treating BE in Az? I am very pleased with NJH and will continue to go there but it sure would be nice to have someone nearby when in Az.
Again I can't say enough about NHJ. I would reccomend everyone with BE to go to a facility like that.

Apparently not. Thanks for the info and your confidence in NJH

@busybeans this is helpful to hear. My local pulmonologist does not agree with the radiology CT reports (3 of them) but says she defers to radiology. The points of disagreement are significant so for the pulmonologist to just throw up his hands is frustrating and confusing. Looking forward to going over the imaging at NJH and hearing their take on it all.

Perhaps the radiologists in your area are familiar with NTM/bronchiectasis and know how to read the scan. I've not found one in southern Arizona that does. My doctor at NJH goes over my CT scan slice by slice looking at every nodule, mucous plug, and airway enlargement BEFORE reading his hand-picked radiologist's report. He then compares the previous CT with the current one to determine what changes (positive or negative) have occurred. Since these are my fragile lungs, I think it's imperative that I have the full, unedited, misinterpreted version. Good luck at NJH. After twice yearly visits for well over a decade, I am still impressed with the quality of care I receive there.

@carolinediehl, bayarea58
I have mentioned elsewhere that I ventured up to NJH in October 2023 after being diagnosed in August of 2022 by my PCP (he finally orderd a C Scan after two ultra sounds) due to the weight loss that he watched me go through as I visited him multiple times during the period of 2020 - 2022 saying something is wrong I keep needing to clear my throat of this "substance." At that time all blood tests were good and my general health in 2022 was still up to snuff for my age so I'm sure that leads to a time a lag element before they realize they need to do more testing. I was concerned with all the visits I had made to him that he might be thinking I was a hypochondriac.
With a visit to NJH you will have a battery of tests and demonstrations. This is to help rule out any other problems that one might have or is of concern also. The tests that they do would probably take a year or more to do if doing them locally due to local scheduling etc.
I was very pleased with NJH, the lead doctor I was assigned to and glad I ventured up there.
With this Mayo site however there was more information to learn and and help with truly understanding, so glad to have both sources available to me, us.

P.S All the doctors I was seeing to get an answer for what I was experiencing, once I told them I made myself an appointment with NJH, highly praised the decision and had all good things to say about NJH.
Barbara

I am going to NJH in April. I would love to learn more about what to expect - the different tests, schedule, report-outs, etc. as well as any advice you have for making the most of the experience. It’s an investment so I want to optimize it. Thanks for any info!!

Jill
I just this past week said to myself "you can't keep all this paperwork" and tossed the individual papers that the, my, NJH representative gave me, while I was there, when I asked if they had print outs of each test I was scheduled for and the description of what the test is etc.
There was someone who gave a list on another thread in Mayo but I don't remember what thread.
I believe if you call or email your representative and ask them to send you the individual explanation sheets/paperwork of the tests you are scheduled for they will send it. Once there and checked in at the main building you will be directed etc. The representatives are in the the building to the east on the lower floor.
My sidekick while there is a medical tech and was very, very impressed with how seamless the entire visit and tests went due to the things in place at NJH. She is not easily impressed.!
P.S. Did you find your way to the private personal message I sent you??
Barbara