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.

@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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@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

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@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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@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.

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@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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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

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@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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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

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@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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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!!

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@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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@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?

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@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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@lindam272, Hi Linda. How was your Thanksgiving? How are you feeling these days? I am hoping you have improved since Oct 30th. I was doing pretty good for quite awhile, but I feel like I have pneumonia. I noticed today that I have a stabbing pain on the right every time I cough or clear my throat. I find it perplexing as I am halfway through a monthly maintenance antibiotic. Hmmmmm. Did you ever find another good doc to see?

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

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

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@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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Terri,
No, but I have a teleflex that you inhale, registering at 2000.

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@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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@joan912 Just remember, clinics are staffed, mostly by people, and people are bound to screw up occasionally. But there are good clinics in Cal. City of Hope, etc. Dan Parker, someplace in Cal did right with me.

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@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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@lindam272 Just a little more input. I had good treatment at the UofA hospital in Tucson, and Sunrise in Las Vegas. Mayo not so much. In fact, crappy and expensive. Should have gone out on the Navajo or Hopi Rez.

Liked by lindam272

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@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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@swalker I have never heard of a teleflex. I will Google that. Is 2000 a good number or what?

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@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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@swalker Hi. I did Google your device. I think you may have accidently put in an extra zero in your text, as the device only goes up to 750 like all other peak flow meters. You and I are both at the same level, 200. I am battling an infection right now, so I will recheck it in a week or two and see if mine goes up any. I have a feeling it won’t, but I will hope….

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@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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@windwalker , Hi, Terri, My Thanksgiving was awesome! Thanks for checking in with me. I’m feeling pretty good. Just got through a course of prednisone to try and relieve a persistent cough. Nurse felt it was more asthma related. I finished the steroid on Thanksgiving day and seem to be doing much better now. I really need to start working out to build up my strength. I’m going to yoga once a week most weeks but haven’t gotten back to strength training or cardio yet. Hope to get that going next week and try to work into my routine. I’m waiting for my sputum culture to come back to find out results of that. Should be in within the next two weeks. Until then, I’m coasting. I’m not as good as I was 6 months ago but I’m better than I was last month so I guess that’s progress! I haven’t looked for another doctor yet. I’ll still with my ID doc and CF doc for the time being unless something comes up that I’m not happy with. I hope what you have isn’t serious and that it’s not pneumonia. The antibiotic you are taking may not be effective for pneumonia so it’s possible it could sneak in in spite of that. Praying it’s not though! Linda

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