Njh visit

I went to NJH in December. Came back with very little difference in my routine. But I’m glad I went!
What they changed was my nebulizing routine-to use the neb cups that connect to the Aerobika and nebulize through the Aerobika while using my vest. So I use all three at the same time.
If you have confidence in your current doctors, then maybe you don’t need to go. I didn’t have confidence in my pulmonologist and didn’t like my ID doctor. They wanted me to start the antibiotics right away even though I had no symptoms. My pulmonologist did start me on airway clearance with 7% saline. The ID doc didn’t think it did anything. Other than the airway clearance, my pulmonologist had nothing else to offer. I was diagnosed through a bronchoscopy and after 9 months when I started coughing up sputum, she never had me send in a sample.
I had to find out how to use my nebulizer online and then later learned about how to clean and sterilize it from others with NTM.
I had to send in a sputum sample to NJH months before my appointment. It showed no NTM. So I would have been taking the antibiotics for no reason. It doesn’t mean I might not need them later.
I enjoyed being able to converse with doctors and staff who know my condition well and not just on paper and have a lot of questions answered. Of course not all my questions were answered but I’m glad I went and I will return for a follow up.

I stayed at Residence Inn Cherry Creek and you do get a discount for being a patient at NJH. It should only be $169.00 per night. We rented a car through Enterprise because it was much more convenient than trying to Uber to hospital and back along with grocery shopping, eating out, etc. If you decide to rent a car the hospital has Valet starting at 8:00 am. Once you get to the hospital it is too hard to leave because you have so many appointments and you do not want to miss one. Dr. Daley was great but I did not have Dr. Eddie. My other doctor was Dr. Kasperbauer. If you have any questions please feel free to ask.

I do not plan on going to NJH but my pulmonologist said I may want to test for an adult variant of CF.
Are sweat tests the initial steps of being tested for adult variant of CF? I have MAC and bronchietasis nodular, as well as recurring staph and pseudonomas lung infections . I am too young to retire so am trying to figure out next steps as my ID doc does not want to treat me for recurring lung infections unless I am sick with fever and chills for 3 days. I have been on the Big 3 for MAC in the past. Thank you for your help.

Hi there. Thanks for all the info you have given..it’s so helpful.
How many times do u nebulize daily? Does a lot of mucus come up? Mine is either clear or light yellow. Would love to hear your experience…..I am pretty new at this. I’m staying at the same hotel you did..going June 28. Thks Bon

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.

I got mine back and I don't understand them but it looks like I do have CF. I asked questions over a week ago on the portal and still haven't heard back. It's really stressing me out.

Same here, I asked a question about something else a week ago, and I have not heard anything. I also called and left two messages to no avail. I was told it takes 2 to 3 weeks for the doctor to get the results and then they will call me. How long have you been waiting for your test results?