1. < MAC & Bronchiectasis

Njh visit

Posted by msk @msk, Apr 2, 2023

Hello
I am currently at njh. Great place, glad i came. Have had all kinds of test. Wondering if any of you had a positive sweat test and high anti nuclear score. Have paid for the gene testing for cystic fibrosis. It takes a few weeks for the results. I was shocked to have high levels. Doctor says all the autoimmune test are not back yet but so far they have been normal. Don’t understand why my number is so high. I leave tomorrow after some swallowing test. I had neck cancer so for me this is appropriate.
Any thoughts would be helpful.
Miriam

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tconz | @tconz | May 10, 2023
In reply to @msk "Stayed at same hotel breakfast was great!! Also you should eat breakfast before you go to..." + (show)
@msk

Stayed at same hotel breakfast was great!! Also you should eat breakfast before you go to hospital. You start test as soon as you get there. You may not be able to eat. Lunch was what i had. It was also very good!
Also th ey have nice selection of restaurants right across the hotel.

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I will definitely be staying at the same hotel when I come back.

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mdf | @mdf | May 10, 2023
In reply to @irenea8 "It seems that quite a few people have elevated sweat tests that have Bronchiectasis and or..." + (show)
@irenea8

It seems that quite a few people have elevated sweat tests that have Bronchiectasis and or MAC. That must be indicative of something!

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I had the same thought. Obviously the experiences of those on this forum wouldn't constitute a scientific study, but the incidence of those who have responded having false positives seems pretty high for such a small population of those who are speaking up on the subject which might be attributable to interest because of the false positives. I only recall seeing one other person on this forum mention that he (I believe it was a he) ended up being positive with the genetic testing. Again, we cannot extrapolate any conclusions, but it would be interesting to find out what is behind it.

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healthybon | @healthybon | May 10, 2023
In reply to @tconz "NJH sent me a packet 3 months in advance that I had to fill out along..." + (show)
@tconz

NJH sent me a packet 3 months in advance that I had to fill out along with Hotels and Car Rentals. I fly Delta so I booked my reservation 6 weeks out and booked my Hotel and Car Rental 2 months out. I am staying at Residence inn Marriott in Cherry Creek (I got a room with a kitchen for cleaning my equipment). They give a discount for NJH patients. It is only 10 minutes away from NJH and Valet opens at 8:00 each morning. Hotel has a continental breakfast but NJH appoints you a hospital room to hang out in during the day (not for overnight) and provides you breakfast, lunch and dinner at no charge (if you choose to eat there). Hope this helps.

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Thks so much for all this info..much appreciated!

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dlynn1210 | @dlynn1210 | May 11, 2023

Is the only NJH in Colorado or do they have other locations?

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1 reply
pjas972j | @pjas972j | May 11, 2023
In reply to @healthybon "I have an appt with NJH on June 28. They did not assign me an ambassador..." + (show)
@healthybon

I have an appt with NJH on June 28. They did not assign me an ambassador because I am also gonna see a cardiologist there after the infectious disease eval. They said they can’t assign me an ambassador until they know in June what cardiologist Dr I’ll see. They have assigned me Dr Jared Eddy for the MAC.I’m wondering..those of you who went there….hOW Much time did you allow yourself to get the reservations like the plane and hotel done. Any suggestions regarding preparing to go to NJHI would most definitely be most appreciated because I feel overwhelmed just having to make plane reservations and hotels without an ambassador‘s help. I wish I had someone here to help/guide me regarding the details of making the trip to Denver.

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When I went last year for my first set of appointments (scheduled for 9 days, only needed 6 of those), my husband and I rented a VRBO about 15 minutes from the hospital. Washington Park and Cherry Creek are both nice areas of Denver. We rented a car because we wanted to do some sightseeing when we had free time, as well as making it easy to go back and forth to the rental. For flights, we took Southwest Airlines from Chicago to Denver.
For my second trip, we did another VRBO. I am going again next week and staying at the Residence Inn Cherry Creek. Like many others have said, being able to boil my equipment was the priority.
The ambassador was friendly and answered my questions. We met her on the first day we checked in, but I did not see her after that.
I hope that having some details helps ease your concerns. Just think of it as taking a regular trip and I'm sure you'll do fine.

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clynnford | @clynnford | May 12, 2023
In reply to @dlynn1210 "Is the only NJH in Colorado or do they have other locations?" + (show)
@dlynn1210

Is the only NJH in Colorado or do they have other locations?

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Only in CO.

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1 reply
dlynn1210 | @dlynn1210 | May 12, 2023
In reply to @clynnford "Only in CO." + (show)
@clynnford

Only in CO.

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I just saw my pulmonologist this morning and he confirmed that NJH in CO is the best place to go for MAC.

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scoop | @scoop | May 12, 2023

From what I've read here, it appears that NJH is a top notch destination best-in-class for NTM infections. If it's a burden to travel, NTM clinics seem to be sprinkled around the country. It could be a first good step to check locally/regionally. It does take some digging to find them but they do exist. A quick google search (non-exhaustive and in no order) yields Cleveland, Boston, Charleston, Baltimore, Loma Linda, Rochester (MN), Phoenix, Jacksonville.

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dltorres | @dltorres | May 13, 2023

What is the average time it takes to get an appointment with NJH? I am waiting for the intake nurse to call. Already had my personal info verified. And they have all my medical records. Just wondering what the time frame looks like.

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1 reply
Rick | @rstel7272 | May 13, 2023
In reply to @dltorres "What is the average time it takes to get an appointment with NJH? I am waiting..." + (show)
@dltorres

What is the average time it takes to get an appointment with NJH? I am waiting for the intake nurse to call. Already had my personal info verified. And they have all my medical records. Just wondering what the time frame looks like.

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3-4 months, you would be lucky to get anything earlier

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