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Experience with National Jewish Health?
Has anyone been to national jewish health that can share there experiences? My dr is recommending a visit to them but I live in wa state so would be quite a journey. I’ve been dealing with mac for 4 plus years. Taking azithromyacin and ethambutol. Couldn’t tolerate the big 3. Also on clophazamine and nebulizer and airway clearance 2 times day. I’m not really sure what else can be done but would love any input.
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@lilianna Your local doctor is probably part of the Epic system, the same system that supports My Chart, and can share records with NJH electronically. Maybe you could, before your next visit, ask him to look at the NJH reports and let you know what he thinks. Good luck!
Yes it’s true.
I too have been referred to NJH and just got the call for my scheduled week in November. I started the process a couple months ago. I have been assigned to Dr. Eddy and Dr Kasembauer -both Infectious doctors. Does anyone know if I will see a pulmonologist? I am very happy with mine here but just thought it weird that one of the docs isn't one.
Also someone a few years ago mentioned that the gastro Doc had a terrible bedside manner. Just wondering if anyone had that experience too. Besides MAC I do have GERD so I know they will be wanting to do tests.
And do they really make you repeat tests? I just had a bronchoscopy in March and really don't want to repeat it. Thanks for your help!
I am on Azith, Rifabutin and Ethambutol with the Aerobika clearance twice a day.
I had a great experience at NJH. Very thorough testing. No bronchoscopy. You will be fine.
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2 Reactions@cpitts I was a NJH for my first visit in February and it was worth all the effort and costs. Your main doc will be an ID doc and you will see a pulmonologist as well. My guess is they won’t need to do another bronchoscopy, you will see a respiratory therapist a few times who will help you produce a sputum sample. I was not a fan of my GI doc either but i met with him once and then he did the BRAVO procedure on my second to last day. I found all the other providers and nurses wonderful. You will never be sorry you went. All the best!
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2 Reactions@cpitts I have only one doctor at NJH, Dr David Griffith, a pulmonologist who is also a leading expert on NTM. So I have no need for a second doctor there. I've heard that Dr Eddy and Dr Kasparbauer are excellent and all the docs specialize in NTM. Because this is your first visit and it will take place over several days, they probably broke it up between the two doctors. On my first visit several years ago I was scheduled to see Dr Griffith first and then Dr Kasparbauer on the last couple of days but because I finished testing early I never got to see Dr K. I've only seen Dr G since then and am extremely happy with him.
@cpitts Usually it is good to have all recent tests, less than six months old available for them to look at and possibly use that information so not to have to repeat the tests.
I would inquire with them before you go.
I also was glad I went to NJH in 2023.
Barbara
I live in New York so I'm very interested in how you navigate getting to NJH, where do you stay, is it within walking distance, or do you rent a car?
A lot of helpful info about lodging, etc. is there on the website and many hotels offer special deals for patients at NJH. Mine included free Lyft vouchers too and from each day
@vstankie Have you looked into Mount Sinai in NYC or NYU Langone.
If I am not mistaken Mount Sinai is directly hooked up with NJH.
NYU Langone has a good program there for Bronchiectasis patients from what I understand.
Had you checked them out?
I did go to NJH and was pleased,. I am in Oklahoma and until recently there wasn't anyone up to snuff here with Bronchiectasis. OU Medical Center is building on the need for greater attention to patients with Bronchiectasis.
Barbara