NJH Patients

I have been to njh two times; it is great.
If you are not experiencing any significant symptoms right now, I would wait.
I recommend doing airway clearance every day. Njh really emphasized this.

I was in the same boat. I just came back from NJH. I don’t have any symptoms. They do many tests and are very knowledgeable about the disease. They try and find the cause and you receive much information. I was doing my airway clearance all wrong and respiratory therapist showed me the proper way. They also recommended a smart vest for me because I am unable to get a sputum sample. Im working with the smartest company now. If you wait until you are sick you will be less prepared. Unless you have very good knowledgeable local doctors. I don’t. They are my doctors now if and when I need them. I follow up with them in 6 months.

I agree with med08. I went to NJH in December. No symptoms, but local doctors pushing to start antibiotics. NJH doctors agreed that I can hold off starting antibiotics at this time. I’m glad to have been examined by a team that specializes and has way more experience in bronchiectasis and NTM than my local doctors. Don’t wait until you are sick. You may have fewer options.

Hi Cheryl!
I wholeheartedly agree that you should go! This is a rare disease and education along with being proactive can be NOTHING but beneficial! It is usually a wait to get in NJH and if you are set up with them- you should go!
Even if asymptomatic, you will learn about your condition, techniques to stay healthy, & ways to avoid additional exposure from the Best of the Best. This is ALL they do!! And if you do become sick, you have a score of specialized doctors to help you navigate. If it is feasible ( not a hardship) for you to go, and I strongly suggest you keep that appt.
All the Best,
Dee

go now....a goal should be to do all the things required to minimize the growth and spread of NTM....and to make sure there are no other conditions lurking in your body.

I went to NJH in October. I've had MAC for over 11 yrs. I also had a lousy Pulmonary doctor. I have other problems too. Pulmonary Hypertention is the big worry. I mentioned it to this lousy dr. and he actually said; "who told you that?" Thats why I went this time. While there, I had many tests, including cultures, bloodwork and a ct scan. I say physical therapist, resperatory therapist and learned better ways for lung clearence. Was very happy to see PH is still mild. Also, MAC is just there. I am not sick. It is a slow grower. I went for my own peace of mind.
I went in 2007, when I had 2 mycrobacteria...Kansasii, and Abscessus. Had surgery. Was on IV meds for 9 months, 3 times a week, twice a day, done by me, at home! Also oral drugs for 18 months. I went to Denver, from NY every 6 months. They are the best. I got rid of those two mycrobacteria!
They tell you the truth, and keep in touch with your doctor at home. My knew Pulmonologist was happy I went. Helps him out too. I am no on steroid inhaler which helps so much. Also on saline nebs which lousy doctor never used. I think its a win win!
They now think it is better to wait. From experience with the other drugs I was on for so long, I agree. They can be rough.

If it eases your mind, and your families, then you should go. There is alway something new to learn while there.
Once you go, you are always a patient. They kept all my records. Its not like starting over each time, even years apart! I will go back!

If I had gone in the beginning I wouldn’t have permanent lung damage. The only symptoms I had was extreme fatigue and night sweats. The only way it was discovered was accidentally on an abdominal scan. It showed part of my lung. I started seeing a pulmonologist and he watched it for 4 years ! He tried to put me on herbs. I was on 4 antibiotics for 18 months. Clear since 2018

If you have an appointment, I would go just to mitigate the risk of it developing into something more serious. I had to wait 6 months for my appointment and I'm very glad I went. Despite the fact that I had zero symptoms, my cavity had grown and NJH told me I needed to be on the Big 3 ASAP. My local doctors had simply advised watchful waiting.

Hello
I will be going to NJH in monday and looking forward to hearing what they have to say.
Question for those if you that have been there. Did medicare and supplement cover NJH? Is considered a second opinion?
Thanks for your help.
Miriam

I have MAI diagnosed since 8/22. I just had my second Pulmonary Function Test and it showed a significantly lower diffusing capacity. My pulmonologist mentioned either repeating the test or doing a right heart Cath to check for pulmonary HTN. Can you tell me more about your pulmonary HTN and how it was diagnosed and checked by NJH to determine yours was “still mild”. Thanks in advance