Mayo Clinic in Jacksonville or National Jewish Health in Denver?

Posted by Nancy C @nac1, Nov 10, 2021

I am considering going to one of these institutions. At 83 and currently doing fairly well despite having MAC disease, I really don't want to go on the BIG THREE. I doubt my local doctors will be willing to try anything new and I want to get well or at least have a life.

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

I don't know anything about the Mayo Clinic but going to National Jewish will be well worth your trip. National Jewish also has great lab which can tell you exactly what bacteria you have any how many colonies you have. That is super important. I visited 1 year ago and spent a week there. They do a really good work up on you and then provide a treatment plan. I have NOT had to go on the Big Three. They are big on airway clearance and if you have GERD following the GERD rules.

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What doctor did you see? I am considering going to NJH after seeing Dr. Charles Daley on You Tube speak at a NTM 2019 Conference.

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@pop55

I don't know anything about the Mayo Clinic but going to National Jewish will be well worth your trip. National Jewish also has great lab which can tell you exactly what bacteria you have any how many colonies you have. That is super important. I visited 1 year ago and spent a week there. They do a really good work up on you and then provide a treatment plan. I have NOT had to go on the Big Three. They are big on airway clearance and if you have GERD following the GERD rules.

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Thank you for sharing this. I know that if I have a recurrence of MAC, I will be going to NJH for their expertise, before I come home to my capable but less experienced docs.
Sue

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@nac1

What doctor did you see? I am considering going to NJH after seeing Dr. Charles Daley on You Tube speak at a NTM 2019 Conference.

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I saw Dr Gwen Huitt. She is great but is retiring early next year.

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I'm heading to NJH on Nov. 30. I have recurrent MAC and hearing loss from Azithromycin on the first round. Anyone who has been there have any advice as I think about packing, where to stay, etc.? They have told me to plan to be there for 10 business days! I'm really looking forward to their evaluation and recommendations, but that's pretty daunting! Sadly, I think Gwen Huitt is basically already out of patient care. I'm sure the rest of the team is wonderful, but I'm disappointed not to be seeing her. I'm scheduled to see Dr. David Griffith the first week and Dr. Jared Eddy the second week (apparently they rotate).

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@marthamac

I'm heading to NJH on Nov. 30. I have recurrent MAC and hearing loss from Azithromycin on the first round. Anyone who has been there have any advice as I think about packing, where to stay, etc.? They have told me to plan to be there for 10 business days! I'm really looking forward to their evaluation and recommendations, but that's pretty daunting! Sadly, I think Gwen Huitt is basically already out of patient care. I'm sure the rest of the team is wonderful, but I'm disappointed not to be seeing her. I'm scheduled to see Dr. David Griffith the first week and Dr. Jared Eddy the second week (apparently they rotate).

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I spent two weeks there in October. We stayed at Residence Inn by Marriott at Cherry Creek. It was the most affordable option I could find and was so nice because each room has a small kitchen. With boiling nebulizer cups and water to drink a kitchen was a must. We had extremely nice weather while we were in Denver and were able to take a few short walks on the greenbelt walkway that ran beside the hotel along Cherry Creek.

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I’m tagging fellow members who I believe are or have been bronchiectasis patients at Mayo Clinic, like
@windwalker @jenblalock @auntnanny @migizii @joan912 @linda272 @bluesplashgirl who can tell you more about MAC at Mayo.

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@marthamac

I'm heading to NJH on Nov. 30. I have recurrent MAC and hearing loss from Azithromycin on the first round. Anyone who has been there have any advice as I think about packing, where to stay, etc.? They have told me to plan to be there for 10 business days! I'm really looking forward to their evaluation and recommendations, but that's pretty daunting! Sadly, I think Gwen Huitt is basically already out of patient care. I'm sure the rest of the team is wonderful, but I'm disappointed not to be seeing her. I'm scheduled to see Dr. David Griffith the first week and Dr. Jared Eddy the second week (apparently they rotate).

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I was there ln Nov 2020 and stayed 5 business days. We stayed at the Hampton Inn and Suites in Cherry Hill. It is near the hospital and some of the rooms have a little kitchen. The hotel rooms were older and kind of tired looking. The staff was friendly and the room was clean. Dr Griffith is wonderful, I think you will be happy with him. I am not familiar with Dr Eddy. I arrived most days by 8:30 -9:00 am and was out most days between 2:00 and 3:00. It goes by pretty quick. They gave us a hospital where my husband and I could stay between appointments. The rooms had a TV and you could order breakfast and lunch. Praying you have a good visit! Please let us know how you make out.

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I'm a patient of Dr Teng Moua in Rochester. So far he hasn't treated MAC — although I do have some. He has just worked with bronchiectasis in my case.

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@pop55

I was there ln Nov 2020 and stayed 5 business days. We stayed at the Hampton Inn and Suites in Cherry Hill. It is near the hospital and some of the rooms have a little kitchen. The hotel rooms were older and kind of tired looking. The staff was friendly and the room was clean. Dr Griffith is wonderful, I think you will be happy with him. I am not familiar with Dr Eddy. I arrived most days by 8:30 -9:00 am and was out most days between 2:00 and 3:00. It goes by pretty quick. They gave us a hospital where my husband and I could stay between appointments. The rooms had a TV and you could order breakfast and lunch. Praying you have a good visit! Please let us know how you make out.

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Thanks so much for the information! I hope I can finish in a week too. Nice to be able to get lunch!

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@coco1970

I spent two weeks there in October. We stayed at Residence Inn by Marriott at Cherry Creek. It was the most affordable option I could find and was so nice because each room has a small kitchen. With boiling nebulizer cups and water to drink a kitchen was a must. We had extremely nice weather while we were in Denver and were able to take a few short walks on the greenbelt walkway that ran beside the hotel along Cherry Creek.

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Thanks so much for sharing. The kitchen sounds like a real plus! I probably won’t get the nice weather you had, but I hope I’ll be ahead of the snow. And I mainly hope I’ll get some good information and advice! I feel better just hearing from someone who’s been there.

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Have any of you been to Mayo Clinic in Jacksonville for accurate diagnose and a treatment recommended? What Dr. did you see? Any suggestions from others who have been there?

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