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joan912
@joan912

Posts: 53
Joined: Apr 09, 2017

Physician recommendation - Arizona Mayo Clinic

Posted by @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.

REPLY

Hi Joan,
If you would like to seek help from Mayo Clinic, you will find contact information for Minnesota, Arizona and Florida on this webpage http://mayocl.in/1mtmR63
Dr. Timothy Aksamit at Mayo Clinic, Rochester is a leading expert in MAC. All of the physicians of pulmonary departments at the 3 locations work together, meaning that you get the same level of expertise at all 3 campuses.

Allow me to introduce you to a few members who I think can provide more details and recommendations according to their experiences.
Linda @lindam272 lives in Arizona. @cld120 @kaystrand @auntnanny and @jentaylor are just a few of the members here who followed at Mayo Clinic, Rochester. And, of course, Terri @windwalker, is at Mayo Clinic, Florida. Terri is currently outrunning hurricane Irma. It may be a few days before she responds.

Hi, Linda…… I went to Rochester (10-hour drive) two years ago and it was a Godsend for me. I was placed with Dr. Teng Moua who I have found to be a great doctor and personality. Very kind. He is a pulmonologist and also works critical care in the hospital there. There is a portal by which to reach him (and he gave me his cell pho number although I’ve never chosen to use that). I can go through the portal or call his medical secretary/staff and if he is in the hospital, a colleage of his will answer my questions and will also prescribe if I’m needing an antibiotic. I think you would be happy there. I have been. I’ve not gone back in two years but they still continue to treat me and I keep contact with them. There’s no charge for the communications in any way. I hope you’ll be happy there too and please let me know after you’ve been.

@colleenyoung

Hi Joan,
If you would like to seek help from Mayo Clinic, you will find contact information for Minnesota, Arizona and Florida on this webpage http://mayocl.in/1mtmR63
Dr. Timothy Aksamit at Mayo Clinic, Rochester is a leading expert in MAC. All of the physicians of pulmonary departments at the 3 locations work together, meaning that you get the same level of expertise at all 3 campuses.

Allow me to introduce you to a few members who I think can provide more details and recommendations according to their experiences.
Linda @lindam272 lives in Arizona. @cld120 @kaystrand @auntnanny and @jentaylor are just a few of the members here who followed at Mayo Clinic, Rochester. And, of course, Terri @windwalker, is at Mayo Clinic, Florida. Terri is currently outrunning hurricane Irma. It may be a few days before she responds.

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Thank you, Colleen. I’ve read information about Dr. Aksamit, who seems to be a leading expert in the field. Perhaps Linda @lindam272 can provide recommendations for the Arizona office.

If you do use Dr. Moua, feel free to mention my name. I’ve been enough trouble that I’m sure he knows me — Ha!

@colleenyoung

Hi Joan,
If you would like to seek help from Mayo Clinic, you will find contact information for Minnesota, Arizona and Florida on this webpage http://mayocl.in/1mtmR63
Dr. Timothy Aksamit at Mayo Clinic, Rochester is a leading expert in MAC. All of the physicians of pulmonary departments at the 3 locations work together, meaning that you get the same level of expertise at all 3 campuses.

Allow me to introduce you to a few members who I think can provide more details and recommendations according to their experiences.
Linda @lindam272 lives in Arizona. @cld120 @kaystrand @auntnanny and @jentaylor are just a few of the members here who followed at Mayo Clinic, Rochester. And, of course, Terri @windwalker, is at Mayo Clinic, Florida. Terri is currently outrunning hurricane Irma. It may be a few days before she responds.

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I see Dr. Justin Seroy Infectious Disease doc out of Banner Medical but I’m not sure I’m crazy about him. My plan has been to research some other doctors in the area that I got off the NTM website but I haven’t had time. Dr. Seroy interned under Dr. James Cook at Loyola who, I understand, is another top doc in this field. Linda M

@colleenyoung

Hi Joan,
If you would like to seek help from Mayo Clinic, you will find contact information for Minnesota, Arizona and Florida on this webpage http://mayocl.in/1mtmR63
Dr. Timothy Aksamit at Mayo Clinic, Rochester is a leading expert in MAC. All of the physicians of pulmonary departments at the 3 locations work together, meaning that you get the same level of expertise at all 3 campuses.

Allow me to introduce you to a few members who I think can provide more details and recommendations according to their experiences.
Linda @lindam272 lives in Arizona. @cld120 @kaystrand @auntnanny and @jentaylor are just a few of the members here who followed at Mayo Clinic, Rochester. And, of course, Terri @windwalker, is at Mayo Clinic, Florida. Terri is currently outrunning hurricane Irma. It may be a few days before she responds.

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Thank you, Linda. The NTM site listed Lewis J. Wesselius, M.D. at the Arizona Mayo Clinic. I might ask for an appointment with him.

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?

@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 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

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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@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.

@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, 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

@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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@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.

@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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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

@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 , 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?

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