Physician recommendation - Arizona Mayo Clinic

@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?

@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...

@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.

Wow, that's terrible!! My husband just had a CT Scan, sputum samples are still waiting for results, and he had many blood tests. I hope this will reduce the costs of anything they suggest having done. I know he absolutely refuses to do a bronchioscopy. I don't know what other tests they'd do other than spirometer (breath capacity). I have not cancelled the appointment in Rochester for Nov. 29, so I guess we'll still go there.

@lindam272 , Linda, I would continue to pursue the Mayo there in Az. Sometimes openings come up, also ask more about the insurance thing. The Mayo in Jacksonville files the paperwork, but I have to pay them, and then Social Security pays me back. If you absolutely cannot get in, then you may try asking your I.D./pulmonologist if they are willing to confir with a Mayo doctor for additional input. There have been other members whose private doctors did that. Do you actually have the CF gene?

@windwalker - Terri, I will call from time-to-time to see if anything opens up. It's not the end of the world as I have my CF doc and my infectious disease doc. My ID doc interned under James Cook at Loyola, one of the top MAC docs in the country and he consults with him about my case. As for the CF, I do not have the gene mutation but am atypical. My first sweat test came back positive, 2nd more in the gray area and 3rd a little lighter shade of gray but still in the low positive range. I will have another one in the next 6 months to see how that turns out. Thanks so much! Linda

@lindam272, Hi Linda. I tested negative for the CF gene also, but I had all of the of the symptoms of a person with CF. I am sorry you are not feeling well lately. Unfortunately these kinds of setbacks do come with the territory. All we can do is stay diligent. I know you will get back to your old self again in time. Big Hug to you.

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!!