Jewish hospital appt

Posted by msk @msk, Dec 24, 2022

Hi yesterday i got my call from denver to schedule my appointment for a second opinion. It will happen in march. Its a two week schedule, they say i will have lots if test
I know some of you have been there could you share your experience and did you get answers. I have been on 3 meds for almost a year and started arikacy 1 mo ago. I was diagnosed as mild to moderate but still positive. Its crazy.
Per my infectious diseases due to bronchiectasis the probability of mac returning is pretty high.
Thanks miriam

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

I was at NJH two times this year. The first visit they do extensive testing. Second visit they develop a treatment plan. They are excellent:)

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I have been diagnosed with bronchiectasis. A visit to National Jewish Health is worth the time and investment. I learned more about my condition(s) than I’d ever imagined. Very comprehensive and holistic testing. My only regret is that I didn’t go sooner.
I will return for my follow up June 2023.
Good luck and keep us posted.

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Hi Miriam,
I am currently waiting on my call from Jewish to schedule. Just curious, how long ago did you do your phone intake? I'm in TX,are you local in CO? Also was March your soonest available appointment? Trying to get an idea about when I can get in for my second opinion.
Thanks!

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@clynnford

Hi Miriam,
I am currently waiting on my call from Jewish to schedule. Just curious, how long ago did you do your phone intake? I'm in TX,are you local in CO? Also was March your soonest available appointment? Trying to get an idea about when I can get in for my second opinion.
Thanks!

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Hi
my infectious diseases doctor did a preliminary discussion with njh around October. They called me in November to get information and then the review my case. I got the call last Friday to schedule the appt. The earliest was march 10 but i had a trip scheduled so had to make it for after the trip. I go at the end of march for almost 2 weeks.I live in Asheville nc and looking forward to hearing what they say. After a year of 3 meds and now arikayce still positive its crazy. I don’t feel that great with the meds. Don’t think i can keep doing for another year. Hope to get answers.
You will hear from them soon. Miriam

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I called NJH last week for an appointment to get a second opinion as well. It appears to be around a month before they call you back for a preliminary discussion. I have not started my meds yet but if appointments are being scheduled in March then I may have to start (ugh). 2 weeks seems like a long time to be there but I would do anything they required of me at this point. I have also heard people mention the Mayo Clinic as well. Curious if you have heard anything about them. Any info is very helpful.

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@clynnford

Hi Miriam,
I am currently waiting on my call from Jewish to schedule. Just curious, how long ago did you do your phone intake? I'm in TX,are you local in CO? Also was March your soonest available appointment? Trying to get an idea about when I can get in for my second opinion.
Thanks!

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Since you are in Texas . The staff at UT Tyler is one of four primary hospitals that have very qualified staff- our physician there is Dr Pamela McShane who was highly recommended by our pulmonologist here in Birmingham Ala at UAB and also MD Anderson in Houston. We have been very pleased.

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Hi Everyone!
I reside in NC and was wondering if anyone knew of any good facilities in my area. I am very close to Charlotte. I am currently under the care of UNC
Chapel Hill, NC. However, they are a teaching hospital with only a handful of doctors who actually are experienced that were available to see me. I am also close to Duke University but they too are a teaching hospital and I don’t know that I would fair any better. My current pulmonologist is lacking in his bed side manner. I have had a continuous fever for a year now, literally almost every day/ and he gets very irritated every time I mention. He thinks there is something else other than my lungs causing that and quite frankly doesn’t want to hear it or deal with it. I have had every test that my primary can think of and he (pulmonary) also did additional tests before putting me on the Big 3. I reached out to an infectious disease doctor locally and after reading my records…. Refused to see me! I’m guessing there wasn’t any other testing to be done. Very Frustrating!!
Thanks!Dee

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Dr Patrick Flume MUSC
Your records will be reviewed before a call to schedule.
Somewhere in Mayo Connect there
was (hopefully still is) a series of lectures early September at Kiawah; Dr Flume was one. That was our introduction to him.Maybe Sue can direct you to those lectures. It’s sinking feeling not to be heard and understood. Good luck! We live near Charlotte and can’t recommend anyone there.

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@nana43

Hi Everyone!
I reside in NC and was wondering if anyone knew of any good facilities in my area. I am very close to Charlotte. I am currently under the care of UNC
Chapel Hill, NC. However, they are a teaching hospital with only a handful of doctors who actually are experienced that were available to see me. I am also close to Duke University but they too are a teaching hospital and I don’t know that I would fair any better. My current pulmonologist is lacking in his bed side manner. I have had a continuous fever for a year now, literally almost every day/ and he gets very irritated every time I mention. He thinks there is something else other than my lungs causing that and quite frankly doesn’t want to hear it or deal with it. I have had every test that my primary can think of and he (pulmonary) also did additional tests before putting me on the Big 3. I reached out to an infectious disease doctor locally and after reading my records…. Refused to see me! I’m guessing there wasn’t any other testing to be done. Very Frustrating!!
Thanks!Dee

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Dr Kenneth Olivier formerly of NIH is now in NC
Website says he is accepting patients

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I live in Asheville and my pulmonologist and infectious diseases doctor both are familiar with mac. However my infectious diseases doctor wants me to go to nat Jewish hospital in denver for a second opinion. I have an sppt in march.
I went to duke for an opinion early on and it was ok. I haven’t been back. I am on the 3 meds and now have started arikayce.
Looking forward to denver and see what they say. Miriam

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