Njh visit

Would you share what you found at NJH that made it well worth the trip. I am seriously considering going but would need my husband to travel with me. I’m 3 years into this and while the first two would have not been difficult for me to travel, my health has hugely deteriorated since last summer. My weight has gone from 125 lbs to 94 lbs and left me weak as a kitten. Dizziness that I live with daily would make traveling through airports by myself a challenge.

I was seen for 11 days which is needed because you will have so many different test. They appoint you a hospital room for daytime (not overnight) and if you need to rest it is great to have. You will also be able to order breakfast, lunch and dinner at no additional charge for yourself. Others can get food from the cafeteria or elsewhere. The knowledge the doctors have is impeccable and I found out things I never knew I had or didn't have. They are extremely thorough and very willing to answer any question (you never feel rushed). I am so thankful I went and look forward to going back in 6 months for a follow-up.

Ditto! I felt the same way. Also will be back in 6 months for my follow up.

Thank you so much for all your positive comments. I’m going to NJH in June 28 through July 7 and I am really looking forward to it. I will find out exactly where I stand with the Mac and from what everybody else says that has gone there it’s an excellent wonderful place. I think I remember you recommending a hotel, there’s so many posts I can’t seem to find it if you could tell me again is it the Cherry Creek Inn or something like that? We would be taking a cab or Uber each day over there. My doctors are Dr. Eddie and Dr. Daley . Did you get a discount at the hotel because you’re going to Jewish? Your posts have been very very helpful to me and I so appreciate you being open about everything because I know nothing and actually left a message for my new ambassador to call me I have a list of questions. Thank you thank you thank you. I wish everybody on our blog could have an opportunity to go there… Especially ones that seem to be getting all kinds of wild and crazy instructions from the regular doctors that really don’t fit. Bon

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.

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?

Hello, has anybody been to the Jewish MAC Institute in Denver. My pulmonologist mentioned that she might consider sending me there.

I’m going there June 28. I have read numerous postings here how fabulous it is. They will help you, me and anyone who has MAC.

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.

Thanks for your comment - very helpful!