I had contacted NJH to obtain a second opinion for my husband. I knew that I would not be able to obtain a referral from Kaiser here in Northern California, so I told them it would be out of pocket. They quoted a price of $30,000 for that, with a discount of 30% for people paying cash, which would be mean a cost of at least $21,000 without including airfare, hotel, food. We would be there for 5 days. I then contacted Arizona Mayo, and they said they needed a Kaiser referral, though I told them we'd be paying out of pocket. I think they misunderstood me. I then called the Rochester Mayo, and they were fine with self-referral and quoted a price of $5000, which would be used to pay for any tests as well as the appointment. If there was money left over at the end of the time there, they would refund the extra money. They said the appointment would last 2-4 days. I went ahead and made an appointment with Rochester for a Wednesday, expecting that the appointment would be over by Friday. I think the Mayo Clinic in Arizona is the place to go for convenience. Another member of this forum said that all the Mayo Clinics are in communication with each other and that any would be good to go to.

@dmarks , if you can swing the trip to Az to go to the Mayo, I strongly urge you to do so. If you have social security, they will pay 80%. I was sick as a dog for years and was very close to needing a double lung transplant 4 years ago. The doctors at the Mayo in Jacksonville turned it around for me. I have improved a great deal, and have a much better quality of life. I have not coughed in a year and a half! I used to cough violently from sun-up to sun-down.I was not put on the BIG 3 antibiotics. My doctor does not believe in doing that unless one is severely infected (highly colonized). We have found that there are different schools of thought on how to treat this disease. I can only speak for myself, my doctor's way was the ticket for me. We are here for you, if you want to discuss anything at all.

Terri, I tried calling to get in with one of the AZ Mayo Clinic docs who was recommended on the NTM website and was told that they aren't taking any government insurance at this time because they are so full. I have Medicare with a Humana supplement and it was a no go for me.

Sorry I've been MIA for a couple of months. Was out of town then not feeling well for a while then ended up in the hospital for a couple of weeks with an unexpected surgery. Back on my feet now, but have a bad feeling about what all that did to my lungs. Having a bad cough and lots of mucous. Just submitted a sputum sample last week so need a few weeks for that to percolate and see if anything grows. Linda

@lindam272, Oh Linda, I am sorry that you have been having a tough time of it. Is there any way you can go to any of the other Mayo Clinics? I have had good luck at the one in Jacksonville. Social security pays me back when I go there. I would be interested in knowing what bug you may have. Are you on any antibiotics now? Are you doing the twice daily saline nebulizing?

Hi,
I live in Livermore, have Kaiser & see ID doc and pulmonologist at Walnut Creek. I also have bronchiectasis and MAC. This is the 3rd time the MAC has returned. My doctors are wonderful & work together. If you'd like their contact info I'd be glad to furnish it.
Since this is recurring, I can see how the thinking changes. About every 8-10 years it rears its ugly head. Kaiser sends the sputum to NJH. They also have phone consults with them.
This is the most confident I've ever felt in regards to my lungs. I've had lung problems for the last 30 years.
Let me know if I can help, Sue

Hello Sue. Please provide the names of the Kaiser doctors in Walnut Creek. I've made an appointment with a pulmonologist in the San Jose Kaiser, but haven't met her yet.
I've rescheduled the Mayo Rochester appointment for February with Dr. Aksamit. If my husband feels that the local physicians can help, we won't need to fly there.
Thank you,
Joan

Stanley Leung is ID
925-295-4613

Kelvin Shiu is pulmo
925-295-4050

Both at Walnut Creek
Feel free to mention my name! Good luck!!

@smaller, Hello Sue. I too have been battling lung issues for the last 30 years. Do you ever use the blow breath meter to measure your breath? If so, what is your number at?

@joan912, Hello Joan. Aren't you near Stanford or UCSF? They are both very good institutions.

Yes, we saw Dr. Ruoss at Stanford, but that didn't go well. I can try to get an appointment at UCSF.