← Return to Njh visit

Discussion

Njh visit

MAC & Bronchiectasis | Last Active: May 31, 2023 | Replies (88)

Comment receiving replies
@lweirdo1

So I'm considering this visit. My only hope is that after all the expense, time and travel that I'm not going back home to the same medical routine I've been doing for over three years. Just wondering and hoping that they actually have plans that will better my current situation. Any thoughts on this?

Jump to this post


Replies to "So I'm considering this visit. My only hope is that after all the expense, time and..."

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.