1. < MAC & Bronchiectasis

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.

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marthamac | @marthamac | Nov 13, 2021
In reply to @coco1970 "I spent two weeks there in October. We stayed at Residence Inn by Marriott at Cherry..." + (show)
@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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pal131 | @pal131 | Nov 13, 2021

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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2 replies
bee1950 | @bee1950 | Nov 13, 2021
In reply to @pal131 "Have any of you been to Mayo Clinic in Jacksonville for accurate diagnose and a treatment..." + (show)
@pal131

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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I live in Jacksonville area & see Dr. Johnson at Mayo. I have both bronchiectasis & MAC diagnosed 4 yrs ago. I went to Mayo for a second opinion & am glad I did. So far I have not required the “big 3” but do nebulize 7% saline faithfully & use the Aerobika afterward. I would highly recommend Mayo.

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1 reply
ckscoville | @ckscoville | Nov 14, 2021
In reply to @pal131 "Have any of you been to Mayo Clinic in Jacksonville for accurate diagnose and a treatment..." + (show)
@pal131

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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I'm a patient at the Mayo Clinic in Jacksonville. I see Dr. Margaret Johnson, a pulmonologist there who has been wonderful. I also saw Dr. Abia Trujillo who was the original doctor to diagnose my bronchiectasis correctly. [Dr. Abia Trujillo is currently doing a fellowship elsewhere but will be back.] Dr. Johnson and her team have been great. After that original diagnosis of bronchiectasis, I have also been diagnosed with cystic fibrosis... so my situation has gotten a little more complicated, but I don't think I could have asked for better care than the Mayo Clinic has given me.

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2 replies
pal131 | @pal131 | Nov 15, 2021
In reply to @ckscoville "I'm a patient at the Mayo Clinic in Jacksonville. I see Dr. Margaret Johnson, a pulmonologist..." + (show)
@ckscoville

I'm a patient at the Mayo Clinic in Jacksonville. I see Dr. Margaret Johnson, a pulmonologist there who has been wonderful. I also saw Dr. Abia Trujillo who was the original doctor to diagnose my bronchiectasis correctly. [Dr. Abia Trujillo is currently doing a fellowship elsewhere but will be back.] Dr. Johnson and her team have been great. After that original diagnosis of bronchiectasis, I have also been diagnosed with cystic fibrosis... so my situation has gotten a little more complicated, but I don't think I could have asked for better care than the Mayo Clinic has given me.

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Thanks for the recommendations.

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lindam272 | @lindam272 | Nov 15, 2021

I have been to NJH 4 times since May. First time was a consultation with Dr. Nick who is the head of the Adult CF department and Dr. King, the head of gastroenterology. I went back and spent 2 weeks in the hospital being treated for pseudomonas and nocardia. Then went back for a follow ups. The two times I wasn't in the hospital and stayed over I went on the NJH website and looked up the hotels listed there as they give steep discounts. If you are getting a car, Enterprise also gives a super nice discount as a NJH patient. I found after the first time when I rented a car, that it was cheaper just to Uber. Anywhere from $35-40 from the airport and around $8-10 to hotel. Probably more now with gas prices. I stayed at the Courtyard by Marriot the first time. 2nd time I stayed at the Hilton Garden Inn and liked it much better. Lots of restaurants you can walk to.
Can't speak to Mayo. Haven't ever been there.
Linda
@lindam272

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raney | @raney | Nov 16, 2021
In reply to @pop55 "I was there ln Nov 2020 and stayed 5 business days. We stayed at the Hampton..." + (show)
@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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Does NJH have partnership with hotels to give patients a reduced rate?

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2 replies
raney | @raney | Nov 16, 2021
In reply to @bee1950 "I live in Jacksonville area & see Dr. Johnson at Mayo. I have both bronchiectasis &..." + (show)
@bee1950

I live in Jacksonville area & see Dr. Johnson at Mayo. I have both bronchiectasis & MAC diagnosed 4 yrs ago. I went to Mayo for a second opinion & am glad I did. So far I have not required the “big 3” but do nebulize 7% saline faithfully & use the Aerobika afterward. I would highly recommend Mayo.

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Does Mayo in Jacksonville to a complete workup of all systems like I am hearing about NJH or is it a regular visit like to a doctors office?

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raney | @raney | Nov 16, 2021
In reply to @ckscoville "I'm a patient at the Mayo Clinic in Jacksonville. I see Dr. Margaret Johnson, a pulmonologist..." + (show)
@ckscoville

I'm a patient at the Mayo Clinic in Jacksonville. I see Dr. Margaret Johnson, a pulmonologist there who has been wonderful. I also saw Dr. Abia Trujillo who was the original doctor to diagnose my bronchiectasis correctly. [Dr. Abia Trujillo is currently doing a fellowship elsewhere but will be back.] Dr. Johnson and her team have been great. After that original diagnosis of bronchiectasis, I have also been diagnosed with cystic fibrosis... so my situation has gotten a little more complicated, but I don't think I could have asked for better care than the Mayo Clinic has given me.

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I live in NC and am considering going to either NJH or Mayo in Jacksonville. Does Mayo Jacksonville also look at other health issues and meds that you are taking for these problems that may affect lungs, (i.e. Heart problems, hernia, GERD)

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1 reply
selockman | @selockman | Nov 16, 2021
In reply to @raney "Does NJH have partnership with hotels to give patients a reduced rate?" + (show)
@raney

Does NJH have partnership with hotels to give patients a reduced rate?

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I was at NJH in Denver a few months ago and they provided me with a list of hotels that would give a discount - most were very close to the hospital.

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