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

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

@tinaesims

It was around 3 weeks. I have my yearly with my primary doctor tomorrow so I think I'm going to have her refer me to a nearby CF clinic. I called them and they said anyone could refer me. I loved it while I was there but I'm not loving them after. It took me 2 weeks to get an ambassador to make my next appointment.

Jump to this post

I totally agree with you and I left a message with the Ambassador I originally had but she was out of town and I have not heard back from her either. I am supposed to start inhaled Amakacin and NJH sent it to my regular pharmacy and it has to go to a Specialty pharmacy so they called NJH and spoke to a nurse over a week ago and I still don't have it. Did the nurse or doctor from NJH call you with Genetic test results saying you were indeed positive?

REPLY

Does NJH have a patient portal for communication?

REPLY
@tconz

I totally agree with you and I left a message with the Ambassador I originally had but she was out of town and I have not heard back from her either. I am supposed to start inhaled Amakacin and NJH sent it to my regular pharmacy and it has to go to a Specialty pharmacy so they called NJH and spoke to a nurse over a week ago and I still don't have it. Did the nurse or doctor from NJH call you with Genetic test results saying you were indeed positive?

Jump to this post

They did not. I read it on the portal. I tried communicating on the portal because that's what the Ambassador told me to do. My ambassador also left and I have a new one. I called her every day for a week. I finally called the scheduling number AGAIN and left a curt message. She called me back that day.

REPLY
@scoop

Does NJH have a patient portal for communication?

Jump to this post

They do but so far, no luck.

REPLY
@tinaesims

They did not. I read it on the portal. I tried communicating on the portal because that's what the Ambassador told me to do. My ambassador also left and I have a new one. I called her every day for a week. I finally called the scheduling number AGAIN and left a curt message. She called me back that day.

Jump to this post

I may have to get that number for scheduling from you because I am supposed to go back in six months. I am hoping someone will reach out to me today.

REPLY
@irenea8

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

Jump to this post

I have both and during my recent testing at NJH, I tested negative on the sweat tests.

REPLY
@scoop

Does NJH have a patient portal for communication?

Jump to this post

NJH has now implemented My Chart as their patient portal. If you had an account on the old patient portal, you must sign up for a new account in the new system. I was at NJH from May 10 thru May 17 and the employees were just starting to use My Chart - not without their struggles I might add. It's always rough going from one system to another. Once they get used to it I think they will find that it is a pretty great software for both NJH and patients!

REPLY
@tconz

Sweat test are typically done first and it you have a high level then NJH recommends Genetic testing. I am waiting for my Genetic test results.

Jump to this post

Thank you!

REPLY
Please sign in or register to post a reply.