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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scoop | @scoop | May 9, 2023

General question: who does the genetic testing? I've been given the name Invitae. It's $250 dollars and if a doctor orders it, most insurance covers it. Apparently there are 42 genes for PCD and CF, don't know the breakdown. Curious to know how it changes the treatment plan? Or is it just more data?

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1 reply
tconz | @tconz | May 9, 2023
In reply to @scoop "General question: who does the genetic testing? I've been given the name Invitae. It's $250 dollars..." + (show)
@scoop

General question: who does the genetic testing? I've been given the name Invitae. It's $250 dollars and if a doctor orders it, most insurance covers it. Apparently there are 42 genes for PCD and CF, don't know the breakdown. Curious to know how it changes the treatment plan? Or is it just more data?

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Genetic testing is Ambry. If it were CF there are many fabulous medications that can possibly stabilize the disease and would be added to whatever medications you are taking now. I won't get my results for 2 weeks.

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tconz | @tconz | May 9, 2023
In reply to @tinaesims "Yes, Dr. Lommentzch. I'm not sure if I spelled it right. I loved her!" + (show)
@tinaesims

Yes, Dr. Lommentzch. I'm not sure if I spelled it right. I loved her!

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My doctors are Dr. Daley and Dr. Kasperbauer. They are wonderful!

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1 reply
healthybon | @healthybon | May 10, 2023
In reply to @tconz "I fly Delta and when I booked my flights the Rep said if I need to..." + (show)
@tconz

I fly Delta and when I booked my flights the Rep said if I need to change for medical purposes they always work with you without the penalties. Hopefully, that is true.

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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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1 reply
healthybon | @healthybon | May 10, 2023
In reply to @tconz "My doctors are Dr. Daley and Dr. Kasperbauer. They are wonderful!" + (show)
@tconz

My doctors are Dr. Daley and Dr. Kasperbauer. They are wonderful!

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Hi I have an appointment to go to NJH on May 29. Could you please share with me how much ahead of time you made your hotel and plane reservations before your actual departure date. Also did the NJH help you in this regard. I know I still have a little time until departure date. but I’m a little nervous because they have not assigned me an ambassador yet because they won’t know The second doctor I’m getting which will be a cardiologist until we’re actually in the month of June. Any suggestions you have regarding making plans to go there, hotels, anything you can think of I would really appreciate I feel kind of overwhelmed. Thank you very much

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1 reply
irenea8 | @irenea8 | May 10, 2023
In reply to @mdf "So relieved for you that it turned out as a false positive. Interestingly, I have not..." + (show)
@mdf

So relieved for you that it turned out as a false positive. Interestingly, I have not accepted the sweat test results as diagnostic because it just doesn't seem to fit. It's not like trying to put a square peg in a round hole but maybe an oblong one in a round hole. However, as the the time ticks, I begin to wonder if it could be correct. It shouldn't be as long of a wait as what is already behind me. Thank you so much for your response; it was a boost of hope.

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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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2 replies
msk | @msk | May 10, 2023

Good point. I was shocked that my sweat test was positive. Glad my gene test was negative.
They should look into why that happens.

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1 reply
tconz | @tconz | May 10, 2023
In reply to @msk "Good point. I was shocked that my sweat test was positive. Glad my gene test was..." + (show)
@msk

Good point. I was shocked that my sweat test was positive. Glad my gene test was negative.
They should look into why that happens.

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So happy for you! My sweat test was extremely high and I am praying my Genetic Test comes back negative.

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tconz | @tconz | May 10, 2023
In reply to @healthybon "Hi I have an appointment to go to NJH on May 29. Could you please share..." + (show)
@healthybon

Hi I have an appointment to go to NJH on May 29. Could you please share with me how much ahead of time you made your hotel and plane reservations before your actual departure date. Also did the NJH help you in this regard. I know I still have a little time until departure date. but I’m a little nervous because they have not assigned me an ambassador yet because they won’t know The second doctor I’m getting which will be a cardiologist until we’re actually in the month of June. Any suggestions you have regarding making plans to go there, hotels, anything you can think of I would really appreciate I feel kind of overwhelmed. Thank you very much

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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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2 replies
msk | @msk | 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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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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