National Jewish Center Visits

@doberdoo I’ve never been to NJC but I’ve read on this site how people have experienced excellent care there.

Would it be worth just asking in advance how regularly your test results could be shared with you during your stay and if airway clearance techniques could be reviewed with you? Barbara outlined a lot of positives with her treatment there as well.

Does any hospital centre provide an absolute “perfect” experience free of little glitches over a lengthy 8-10 day visit? Maybe not each time and Barbara experienced that as she would have preferred getting her results daily ( if that were possible or at least more often).

An important question though might be, do they have the expertise and are they willing to do testing to diagnose and identify next steps, and follow up with you? Based on what I’ve read from other people’s experience, it sounds like NJC does that for patients. Maybe others could clarify that for you.
All to say, it might still be worth the NJC visit.
All the best with making your decision.

@doberdoo I’ve never been to NJC but I’ve read on this site how people have experienced excellent care there.

Would it be worth just asking in advance how regularly your test results could be shared with you during your stay and if airway clearance techniques could be reviewed with you? Barbara outlined a lot of positives with her treatment there as well.

Does any hospital centre provide an absolute “perfect” experience free of little glitches over a lengthy 8-10 day visit? Maybe not each time and Barbara experienced that as she would have preferred getting her results daily ( if that were possible or at least more often).

An important question though might be, do they have the expertise and are they willing to do testing to diagnose and identify next steps, and follow up with you? Based on what I’ve read from other people’s experience, it sounds like NJC does that for patients. Maybe others could clarify that for you.
All to say, it might still be worth the NJC visit.
All the best with making your decision.

@doberdoo I’ve never been to NJC but I’ve read on this site how people have experienced excellent care there.

Would it be worth just asking in advance how regularly your test results could be shared with you during your stay and if airway clearance techniques could be reviewed with you? Barbara outlined a lot of positives with her treatment there as well.

Does any hospital centre provide an absolute “perfect” experience free of little glitches over a lengthy 8-10 day visit? Maybe not each time and Barbara experienced that as she would have preferred getting her results daily ( if that were possible or at least more often).

An important question though might be, do they have the expertise and are they willing to do testing to diagnose and identify next steps, and follow up with you? Based on what I’ve read from other people’s experience, it sounds like NJC does that for patients. Maybe others could clarify that for you.
All to say, it might still be worth the NJC visit.
All the best with making your decision.

This protocol is awful. Why go if they are not going to share results as the tests are done. It does not allow for questions with the doctor on what it means and treatment options. And no training on anything is preposterous. I am now rethinking booking a visit there. They sound just as bad as my current one. I thought NJC was the best in the Nation. Any advice on where I should go instead. What is the top ranked center in the US for pulmonary disease

"@doberdoo I accidently replied this answer first to another rather than to you, so sending it to you now.
I wrote what I wrote to help one to be alerted to what to ask for and stay on top of communication if going to NJH or any medical facility. I was suggesting that we need to be aware of helping ourselves in staying on top of communication, which in many situations is that way even with lawyers and other professionals in order to help oneself. It was well worth going to NJH for me due to all they test you for and to understand you as a patient and your systems. As I said they do show you how to use the Aerobika etc. etc. I liked my lead doctor, as well.
No it was not awful, overall all went smoothly and everyone was very nice.

Again, they did share the tests when they were done, it was just on the last day for me. It just was overwhelming for me hearing about the tests on the last day and I didn't know and fully understand enough about what the tests and what it all meant.

Please understand it was well worth it for me to go. Remember I said one other person on this site had communication each day about the tests.

Again, I was alerting Jill to what one one might want to request and ask for.
There will never be an absolutely perfect situation no matter the type of involvement, be it medically, home remodel, car repair etc. etc. etc.
Barbara

I'm sorry to hear about Barbara's bad experience at NJH. I started going there in 2022 at the advice of my PCP. I have nothing but praise for the care I've been receiving from my doctor and the ancillary staff there. At my first 7 day long visit I saw the doctor at the end of each day so we could discuss test results and the plan for the next day.
I also spend a lot of time with the respiratory therapists who showed me how to use the Aerobika and produce sputum, which I'd never been able to do before. I still send sputum samples up to Denver every 3 months, as they have the best lab in the country. Others have mentioned the thorough testing regimen so I won't comment on that. I don't think you could get better respiratory care anywhere. To my spouse and me, it's worth the 12 hour drive or the $500 flight to get there. BTW, you might consider an Airbnb for you initial visit. Hotels are expensive there.

Hi Jill- Had not seen a post of yours recently and had thought of you and wondered how you are doing.?
Not sure I have any "hacks' .
However, one of the things I think is good for us is to ask for a review of the daily tests at the end of each day rather than the way I received the test results. My review of all the many tests was given to me on the last day of my visit, all the tests results at one time. Too much information to digest all at once verses getting the results at the end of each day. If that is possible. One person on this site, Mayo, said that they did get results at the end of each day. Getting the results at the end of each day will allow you to digest and reflect or search info in the evening about what you were told, to understand all and possibly think of questions you might need answers to for clarification.
The other thing that I feel they needed to do is to dedicate more time to teaching the proper use of the Aerobika, nebulizing and the Huff Coughing Method to be sure you truly understand the methods and are doing them correctly.
Sorry to say no one mentioned or showed me Airway Clearance Techniques nor did they take the time with a Respiratory Therapist to make sure I was helped to get a good sputum culture while I was there.
Due to distance I changed from NJH to Tyler, TX. While at Tyler, TX on my first visit Dr. McShane had the Respiratory Therapist come in and do the Nebulizing, Aerobika, Postural Drainage and Huff Cough with me. Just before I did the huff cough the Respiratory Therapist did percussion clapping on my lower lungs. I really produced a good specimen, but, they forgot to label it and I found that out after having left Tyler. The specimen had to be discarded with it not having a label on it with my name etc. Things happen. Dr. McShane on my first visit gave me information on Air Way Clearance and sites to go to to learn how to do Air Way Clearance at home.
So, my disappointment after my visit at NJH, for me, was that they, someone, did not demonstrate, discuss, tell me about or do with me the Airway Clearance Methods. Between Dr. McShane and this Mayo site I learned about Air Way Clearance Methods.
Also, I was not able to have direct contact with the gastroenterologist before leaving NJH and received a prescription for a medication after I was home. He was suggesting I start a medication without being fully informed as to why it was prescribed. Perfection regarding communication etc. is impossible no matter where no matter when. I had to look up on the internet what the medication was typically prescribed for. I didn't like the possible side affects and did not start it. I'm doing fine.
I have made decisions for myself knowing myself and what I feel is best for me in the big picture. As I said am doing fine in the big picture, at least for now and have been for the last couple of years after learning about this journey with Bronchiectasis and the MAC infection.
My worst problem is the constant need to clear my throat of what comes up nearly all day long. No aches or pains and that's a good thing.
Hope this helps in knowing what you can do to help yourself, while there, when it comes to that all important thing called 'communication.'
P.S. The Cherry Creek Area is very convenient to everything. Have you decided where you are going to stay?
Barbara

Hi again -
After reading your message, I made a point of calling my "advocate" at NJH. They said I am scheduled to see the respiratory therapist at least 4 times while I am there. She said that this is a huge part of their program and that it is very important that patients know how to do airway clearance properly. She also said that I see a nurse practitioner and/or doctor every day, and that they will be reviewing my test results as they come in, and will not wait until the end. She asked me whether you went through the "NTM Program" or "Pulmonary." She said there is a huge difference between the two programs. I'm not sure what to make of this, but I really appreciate you pointing these things out to me so that I could double check and be reassured. I will definitely report back to the forum after my visit!
Jill

This protocol is awful. Why go if they are not going to share results as the tests are done. It does not allow for questions with the doctor on what it means and treatment options. And no training on anything is preposterous. I am now rethinking booking a visit there. They sound just as bad as my current one. I thought NJC was the best in the Nation. Any advice on where I should go instead. What is the top ranked center in the US for pulmonary disease