NJH Patients

The sweat test is to test cystic fibrosis. It seems it causes bronchiectasis. My infectious diseases doctor sent them all my results of my sputum samples. They did 3 sputum samples when i was there. I hope this helps.

I am wondering, if all you guys that went to NJH…..did they have you do the watchful waiting thing?
I am going to be going there (in process),,,,local ID dr wants to rush with the antibiotics and I have only had one sputum test……( and I don’t have a lot of the heavy symptoms either )…isn’t that rushing things a bit? I am tiny, and very drug intolerant…and don’t want the Big 3….it would wipe me out…please advise your experience with NJH. I can’t wait to see them….I desperately need help and answers.

NJH is excellent 👌 👏. They will do a thorough exam and answer all your questions.
I have been on the Big 3 since last summer. No issues.

Has anybody who has been to NJ have advice how to prepare for a visit there?

I was diagnosed with Bronchiectasis and MAC in 2017. The Doctors I went to said to do nothing. They did a CT every year and said do nothing until 2022. By then I had lost some pulmonary function. I wish I had know about airway clearance in 2017. If I had been doing it since 2017, I would not be having the problems I am having now. Go to NJH and get a baseline and start air way clearance and you won’t have to worry about it getting worse.

How do you mean prepare for a visit to NJH? They have a packet of information you will receive to send back to them and also some things they ask you to do. They ask that you have your records sent to NJH before your visit. I also carried hard copies in case they hadn’t received them. They also want you to bring a copy of your CT images on a disk so they can compare them to one they will do there. Personally, bring your patience and be prepared to go for different tests every day. At the end of each day you will be able to talk with your doctor or a nurse practitioner and discuss test results and ask questions. You’ll also get the next day’s schedule so you know what time to arrive.

Thank you for the information. I am waiting for the packet to arrive. My question is when you stayed there, was it in a hotel? And how did you manage the cleaning and sterilizing of your devices? Also even if you are assigned to a doctor at NJ (mine are Dr. Griffith and Dr. Kasperbauer- has anybody had any experience with them?) do you still keep your pulmonologist and the ID doctors at home? If yes, how do they communicate? Thank you. I have so many questions because I am anxious about the visit. It's far from me and its almost two weeks stay. I am so afraid to change my routine and not to get sick.

Is there any "Ronald McDonald Houses" in your area?
My family had to use these 'hotels', for about 3 months due to medical treatments. They were wonderful. We have them in Canada... would think you do too.
Lovely accommodations and a built in support groups!
All the best to you in your journey!

I stayed with family but they do have hotels that give discounts (I've been told). I had Dr. Griffith. You will really like him. He was extremely easy to talk to. I was supposed to go back for a follow up but I decided to stay home with my pulmonologist. Communication is not a strength of NJ. With that being said, Dr. Griffith did call me on a Friday night to talk about my diagnosis.
I'm glad I went though. I was diagnosed with Adult Cystic Fibrosis. I will start going to a CF clinic about an hour away. It took them months to refer me.

When my husband and I went to NJH, we drove because I had to take my sick and elderly dog with me to take care of. We stayed at an Airbnb but many on this forum have stayed at a hotel that has a fridge and microwave in the room. I was able to boil my neb cup in the Airbnb because it had a kitchen. (If I had stayed in a hotel room, then I would use the microwave steam bags or take an electric pot to boil my neb cups.)
I saw Dr. Griffith. I was in the process of switching pulmonologists at home and the new pulmonologist I changed to was known by Dr. Griffith and he said they would communicate. I’m sure this doesn’t always happen. I send my quarterly sputum samples to NJH, but I think I am having a flare up, then I will send in sputum to a local lab for the local pulmonologist.