Coordinating between NJH and your regular pulmonologist and ID doctor

Posted by pjas972j @pjas972j, Mar 8, 2022

I have an appointment in early April to visit NJH. I am very thankful for the opportunity. I'm wondering how the process works after you return home. Does your regular pulmonolgist and ID doctor just read the notes? Do you email NJH if you have a question or problem and copy your local medical team? What does follow-up look like after a visit to Denver? Do most people go just once or return periodically? Thanks for your insights! Jennifer

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I'm currently on the Big 3 and go to NJH every 6 months. I'm also based in AZ, so I simply fly out early in the morning and am back home by late evening. I have a local pulmonologist with whom I meet every few months for script updates and check-ins and he is the person I would consult in the event of a non-MAC respiratory issue. However, I control all the info regarding my NJH tests and check ups and forward to my local pulmonologist when I see him.

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@pjas972j

Thank you for all the details! I am thankful for this opportunity. My visit is for nine business days. I'm guessing they have stretched it out because of staffing issues. Small price to pay for excellent care!

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Best wishes to you too and appreciate the information above! I am going for 7 days in May!

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@cmi

I can share my experience. NJH is an amazing place. I was there last May 2021 and have my follow up this June 2022. The staff, the coordination, the process…they have the drill down to a science. (I say this because I worked in Charlotte NC largest hospital for 4 years and never witnessed such professional care & consideration) Dr. Daley is “Chief” of ID clinic. They do perform as a united team of expertise. All departments communicate any and all results with him. He has ordered your “workup” and any additional testing is ascertained at intake wherein you should share any and all of your thoughts or worries that may not have been acknowledged by your team back home. These teams in Denver…are the “all stars”. They will modify daily even hourly any changes in your schedule and you will have a staff member walk you through “everything “. You are responsible for the “time keeping” …you must be at any scheduled appointment on time. They were constructing there new building last year so things were spread out on the campus…that may have changed…regardless they will give you a detailed tour of where every department is and a map. Trust in the system.
Then after all testing and multidisciplinary interviews…mine lasted 3 days…you will meet Dr. Daley. He is quiet impressive in my opinion…he listens and responds clearly. You must be your own best advocate and have questions and doubts and hopes ready to express.
When you leave you will have answers and a plan for treatment and NJH and your doctors back home will communicate. That is their responsibility after you share the contact information and request same. NJH is the “specialty hospital” with the rockstars in this field and will “jointly” share their opinions and findings with home doctors to deliver the best care you can receive.
I will not attest that all will be “easy”. These doctors are human beings as we…and suffer same mishaps in Denver as we do back home.
Last year when covid was spiking, they lost a lot of staff and months went by when I heard nothing and felt abandoned. You can write through the patient portal to anyone of your doctors…you can call and speak with caring nurses who will pass on your messages. You can print any and all results and summary clinic reports from that patient portal also.
I hope your experience is as good as mine was. You can tell Dr. Daley about this review (saw Regina Undorfer says😎) and I bet he will laugh.
Good luck and stay in touch.

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Hello, Sounds like a wonderful place. Just curious, have you ever been to Mayo, and if so, what was your experience? Thanks

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I have not been to the Mayo Clinic. My ID doctor in Charlotte spoke highly of only NJH and encouraged me to seek their input for a second opinion when I was diagnosed after my Bronchoscopy in 2020. There are plenty of others in this forum who have personal experience with Mayo. Stay well.
Regina

REPLY
@cmi

I can share my experience. NJH is an amazing place. I was there last May 2021 and have my follow up this June 2022. The staff, the coordination, the process…they have the drill down to a science. (I say this because I worked in Charlotte NC largest hospital for 4 years and never witnessed such professional care & consideration) Dr. Daley is “Chief” of ID clinic. They do perform as a united team of expertise. All departments communicate any and all results with him. He has ordered your “workup” and any additional testing is ascertained at intake wherein you should share any and all of your thoughts or worries that may not have been acknowledged by your team back home. These teams in Denver…are the “all stars”. They will modify daily even hourly any changes in your schedule and you will have a staff member walk you through “everything “. You are responsible for the “time keeping” …you must be at any scheduled appointment on time. They were constructing there new building last year so things were spread out on the campus…that may have changed…regardless they will give you a detailed tour of where every department is and a map. Trust in the system.
Then after all testing and multidisciplinary interviews…mine lasted 3 days…you will meet Dr. Daley. He is quiet impressive in my opinion…he listens and responds clearly. You must be your own best advocate and have questions and doubts and hopes ready to express.
When you leave you will have answers and a plan for treatment and NJH and your doctors back home will communicate. That is their responsibility after you share the contact information and request same. NJH is the “specialty hospital” with the rockstars in this field and will “jointly” share their opinions and findings with home doctors to deliver the best care you can receive.
I will not attest that all will be “easy”. These doctors are human beings as we…and suffer same mishaps in Denver as we do back home.
Last year when covid was spiking, they lost a lot of staff and months went by when I heard nothing and felt abandoned. You can write through the patient portal to anyone of your doctors…you can call and speak with caring nurses who will pass on your messages. You can print any and all results and summary clinic reports from that patient portal also.
I hope your experience is as good as mine was. You can tell Dr. Daley about this review (saw Regina Undorfer says😎) and I bet he will laugh.
Good luck and stay in touch.

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NJH sounds like a terrific specialty hospital.
I have been recently diagnosed and am in the Chicago area and trying to find a great pulmonologist here. I also am currently on a hmo and thinking of switching to original Medicare with supplement. Although I have very mild symptoms I’m thinking if and when this progresses I should have health insurance that allows me to choose my own doctors. Just wondering if you’ve come to the same conclusion. Thanks so much!

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I agree with your thinking (for the future). Firstly, bravo that you have mild symptoms…keep up the good self care. Second, you definitely need the best home town pulmonologist/and ID doctor to work together for your best plan of care and treating flare ups or new symptoms if they present. The strongest, best in their field, specialist, have the confidence in their work to support second opinion and team participation for excellent patient care (it actually takes some pressure off them to share the work load). So getting evaluated in another “speciality clinic/hospital “ should be agreeable.
Last, yes…I have Medicare and a very good supplement…this has allowed me to pick and go where I want. However, I do not like surprises from the financial departments in hospitals, so I always check that they have “authorized” my visits and treatments. Even the best hospitals sometimes “miscode” diagnostics and then insurance will not pay. Never hurts to get answers first.
Good luck and stay well.
Regina

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@323

NJH sounds like a terrific specialty hospital.
I have been recently diagnosed and am in the Chicago area and trying to find a great pulmonologist here. I also am currently on a hmo and thinking of switching to original Medicare with supplement. Although I have very mild symptoms I’m thinking if and when this progresses I should have health insurance that allows me to choose my own doctors. Just wondering if you’ve come to the same conclusion. Thanks so much!

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I am in a similar situation- was thinking I would have to go with traditional Medicare but was pleasantly surprised to find out some of the advantage plans allow you to see other doctors- I live in MO and was told NJH was in network.

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Thanks for getting back to me so quickly!
Good to know that some of the advantage plans cover NJH. I’ll go ahead and check into which advantage plans will cover there. Thanks again!

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Hi! I have bronchiectasis, MAC and Aspergillus...Aspergillus treated a year ago, never treated for MAC because I have been very healthy, active with good numbers. I contracted HMPV at Christmas though and became very, very sick. Hospitalized. Took 2 months to recover and I am about where I was but Aspergillus back and MAC now morphed into sub species abscessus. Discussing options now with 2 pulmonary in Houston area. Here is my question. It was recommended I try to to set up telemedicine /2nd opinion appointments with Mayo and NJH. Is anyone familiar with this type appointment? My husband has early Alzheimer's and all the logistics coming and going can be overwhelming especially if I am tied up there. Please let me know if anyone has info on this. I am not sure if I posted this correctly 😎 I have never asked a question before! Thank you!

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@kathleenlp

Hi! I have bronchiectasis, MAC and Aspergillus...Aspergillus treated a year ago, never treated for MAC because I have been very healthy, active with good numbers. I contracted HMPV at Christmas though and became very, very sick. Hospitalized. Took 2 months to recover and I am about where I was but Aspergillus back and MAC now morphed into sub species abscessus. Discussing options now with 2 pulmonary in Houston area. Here is my question. It was recommended I try to to set up telemedicine /2nd opinion appointments with Mayo and NJH. Is anyone familiar with this type appointment? My husband has early Alzheimer's and all the logistics coming and going can be overwhelming especially if I am tied up there. Please let me know if anyone has info on this. I am not sure if I posted this correctly 😎 I have never asked a question before! Thank you!

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Hi, I did telemedicine a couple of times during Covid, it was helpful to have my list of questions written down and to check off as they were answered. I didn’t do this, but it may be helpful to have a medical type friend in the room to take notes.

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