At NJH and need to vent

Sorry to read about your frustrations after traveling and $pending valuable time and money to get to NJH. Terrible on top of everything that you are experiencing with your health. Mismatch between expectation and experience, sadly, is a common occurrence, not only in medicine. NJH sounded wonderful from others' descriptions. Now that you've vented, it's time to regroup, focus on what you are there for. Establish (or repair) relationships. Gather your thoughts (outside of the frustration) and write down what your goals are for this experience. They will help guide you to refine your list of questions and concerns. Try to salvage as much as possible from the experience. Eat a good meal. Take a walk. And remember to breathe!

Thank you for your fantastic comment you are so wise and I are agree with you completely. Appreciate that you took the time to answer.

I'm so sorry this is happening. I had the opposite once I got there. I will agree the ambassador's are no help at all!!! My respiratory therapists were kind and loving. I hope you get one of the kind loving ones!!! My doctor sat and talked and listened. I also saw a CF doctor that was certainly a jewell!!!! Dr. Griffith called me at 5:00 last Friday night to tell me the results of the genetic testing. My problem has been the after care. I don't blame the doctor. Other than the doctor calling me, there have been no referrals like they said they were going to do. My local pulmonologist said he would happily do that for me. I am supposed to go back in August but have decided to cancel the appointment. Not because I'm unhappy with the care there but they have done what they can do and the local people (that are excellent) can take over from here. I will admit the lack of communication following my appointment has been frustrating.

I’m so sorry to hear you experience at NJH is not going well. My ambassador did not make my dates but I was given his contact information after my visit was scheduled. Can’t say he was much help though with the few questions I had before going. My respiratory therapist was okay. I’d already been nebulizing a year so all she mainly taught me was to connect the Aerobika to the nebulizer.
Your best takeaway is that it is confirmed that you do have bronchiectasis and MAC which is something more than your current pulmonologist did. This and the other tests will be good information when you see the doctor in Atlanta. Be sure and request your NJH records to be sent there. Listen to Scoop and here’s hoping your visit gets better.

I am so sorry to hear you are experiencing such disappointment. I had excellent care while there but once I left everything changed. I am supposed to go back in November but may hold off until I find out more about your Doctor in Atlanta (much closer to me) that specialized in Mac/Bronchiactisis.
The doctors I saw were excellent and took as much time as I needed so, do you mind telling me who your doctor was (just want to make sure I don't ever get them)?
Since you are already there just absorb as much helpful information as you can and if I can help with my experience with any of the medications or equipment please don't hesitate to ask.
Again, sorry you are experiencing this kind of treatment.

Sounds like you had Dr. E
The worst part of my visits to NJH was the record transfers from my hospital just down the street, it was bad and they made it out like it was my fault and wanted to redo all the tests but NJH computers were antiquated. I did like the RT's even though they lost some test results and I had to call several,times to get my clinic notes posted.

Hey Bon!
I agree with scoop, you need to regroup and focus. You’ve already spent the money the time and the resources to be there and they are the best in their field. Get a concise question list together and go through them by bullet point if need be. Please don’t let your anxiety and disappointment ruin the opportunity to get as much information and knowledge as you can. I know you’ve done some research. Maybe you need to do a bit more with listing your questions. Keep in mind what your end goal is… no matter who we see we have to be our own health advocate. Don’t get frustrated, get assertive and prepared.
ALL THE BEST! Dee

I am so sorry you had this experience. Mine was totally different and being a nurse I was very impressed with how the visit went. Doctors, nurses, respiratory therapists and ancillary people were all knowledgeable and helpful! (Mind you I’ve never told any of them I’m a nurse because I did not want to be treated as if I already knew most of the information). I will have to agree with others that after the visit it is hard to get return calls or emails. Be the squeaky wheel and you will get answers. I will continue to go because they are the EXPERTS in this disease. I did my research and this is why I chose National Jewish. You are the best advocate for yourself. Take away as much information as you can get. See your new doctor. Remember, the doctors are also learning daily how to deal with this disease. Every patient is unique. Be in tune to your body and keep a journal of changes. Even though I’m a nurse, I learn something new about this disease weekly. It can be overwhelming both emotionally and physically. If you need to talk or have questions please reach out I would love to help in anyway. Tomorrow is another day!

Hi Bon,
I am very sorry to know about your disappointing experience in NJH. This is the trip you had to make to have a peace of mind, right? Now you did. Focusing on trying to get the most out of the trip. One thing you know now is that you do have bronchiectasis and MAC, so you don't have to doubt any more. Did he answer your questions regardless of his irritation? Focusing on what he said, not how he said it. Did he suggest the path you should take to deal with it? Now you have some different perspectives/opinions, to me the more information you have the better it is to help you make the right decision for yourself.
Take care!
Ling

I’ve never been to NJH, but I do go to Dr Swenson in Atlanta. I find him quite willing to answer any questions I have. He is also responsive to follow up questions on My Chart. Once he sent me a response on Sunday evening. It takes a few months to get the first appointment, but once in the system all flows well. Be sure to have all your records sent to him and take any paper results, CT results or CDs of the scan. He wants to review everything you have, plus do his own test where needed. I think you both will find he takes a personal interest in you.