1. < MAC & Bronchiectasis

National Jewish Center Visits

Posted by doberdoo @doberdoo, Apr 5 3:43pm

I am having horrendous problems with my doctors at Northwestern University. How they ever made it to the CCN top centers list is beyond me. Their whole lung clinic is abysmal. I have determined for my own health and proper treatment I am going to try and switch to the University of Chicago. Before doing that I thought it would be a good idea to go to National Jewish and go through their MAC and bronchiectasis protocol. I am writing to ask advice of anyone who has been there. How do you get in? Do you need a referral? Is there some way I can arrange a visit directly with them? I am at wits end as I quickly decline with no help or responses from Northwestern. They are content to let me die so I have realized I have to be my own advocate. Hence the thought of visiting National Jewish. Any input regarding how to do that would be appreciated. Thank you.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

reneemc | @reneemc | Apr 8 11:19am
In reply to @blm1007blm1007 "Interesting, "NTM Program or "Pulmonary." I wonder what the difference is. However, at the time I..." + (show)
@blm1007blm1007

Interesting, "NTM Program or "Pulmonary." I wonder what the difference is.
However, at the time I made my appointment I did not know I had an infection, MAI.
My local pulmonologist was not doing much for me and therefore I apparently was walking around with the infection for some time. It wasn't until the end of my visit that they were able to fully confirm I had an MAI infection.
I would think they had me scheduled for the NTM Program since I had to do a before visit sputum sample (sent in) and a couple of sputum vile samples while there and they did the bronchoscope that I agreed to. With all that, I learned I had an infection.
I had a trained medical tech with me who was very impressed with the entire arrangement and scheduling. Overall my testing and experience at NJH was pleasant and well worth it, for me, and expect it will be for you.
So glad you called and will have a better grasp of many things before you go.

Yes, after your visit and Bayarea's visit and what we all will have learned and experienced with our visit to NJH it will be great information for the Mayo site to have from all of us for others to have.
I came home feeling I had a medical vacation. I enjoyed Denver, the Cherry Creek area and, as well, some really good restaurants. The October weather and nature provided a beautiful setting.
Barbara

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You had a bronchoscopy while you were at NJH?

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2 replies
blm1007blm1007 | @blm1007blm1007 | Apr 8 1:56pm
In reply to @reneemc "You had a bronchoscopy while you were at NJH?" + (show)
@reneemc

You had a bronchoscopy while you were at NJH?

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Yes. It appears you may be surprised that I did have the bronchoscopy while there.??? Are you??

I was told by my lead doctor that with doing it, Bronchoscopy, we could know what was going on inside my lungs...at least something like that was discussed. At the time I was there I had not found this Mayo site and was very overwhelmed with my diagnosis of BE and not knowing much about Bronchiectasis before going there. I probably would not have had it if I had had more information about it vs the fact that we did/do sputum testing to understand if we have an infection.
Thankfully all went well and it was a breeze during and after for me.
Barbara

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hicopd | @hicopd | Apr 8 6:55pm

Even though I wasn’t at NJH for Bronch/NTM, I always got my results immediately instead of at the end of my week visit. It was important, so we could decide on next steps.
We did a follow up based on one result (it helped us better understand what was going on with me). It was good I stayed longer than they planned (told me a week but I stayed 10 days so last day, could do follow up on results of earlier results).

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Rick | @rstel7272 | Apr 9 8:39am
In reply to @reneemc "You had a bronchoscopy while you were at NJH?" + (show)
@reneemc

You had a bronchoscopy while you were at NJH?

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NJH is not as anti-bronchoscopy as some facebook groups would lead you to believe. It's a valuable tool that may be used in a difficult diagnosis.

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blm1007blm1007 | @blm1007blm1007 | Apr 9 10:15am
In reply to @lindabourassai "I was at National Jewish for a week. I received so many results from the tests..." + (show)
@lindabourassai

I was at National Jewish for a week. I received so many results from the tests that they were almost an inch thick in hardcopies. Two doctors were there for my exit interview i.e. Dr Daley and Dr. Eddy, at which time I could ask questions. It is strange that different people have such different experiences.

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Yes "It is strange that different people have such different experiences." I wonder if each doctor is able to decide how to handle discussing the test results in the way they want to rather than a set way, policy, that requires each lead doctor do the same type of procedure and timing for the discussion of the results of the tests. Overall each of the testing departments etc. and the scheduling of everything appears to have a set way, policy.
I'm sure it also depends upon staffing etc. at the time or all times as it is with many things today.
Always much to learn and be aware of so we know what to request and ask for, if it is at all possible.
Barbara

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hicopd | @hicopd | Apr 9 11:52am

I did have a bronchoscopy and saline lavage with some small tissue samples taken at one of my multiple visits at NJH, when they were trying to understand why my imaging of my lungs was showing new opacities. It was done under conscious sedation and it was uneventful. I could see the screen (as well as I could see without my glasses) while it was being conducted.

It is the only bronchoscopy I’ve had in the 25 years since my diagnosis with hs ideopathic emphysema.

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pjas972j | @pjas972j | Apr 9 3:07pm

Hi! I live in the Chicago area and had trouble with my pulmonologist as well. I went to NJH several times and was very happy I did. I am now much more stable and get my care from the Bronchiectasis Clinic at the University of Chicago Medical Center downtown. I have been with them for over two years. Dr. Naureckas started many years ago treating CF patients and saw the need to expand to bronchiectasis patients. They respond quickly to emails and I have had no regrets. The hour drive from the suburbs is a pain but right now I only see him twice a year. It's much less expensive than my trips to Denver. Maybe you could go to NJH for a full battery of tests and once you are in a good place, consider University of Chicago.

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1 reply
lilianna | @lilianna | Apr 10 8:05am
In reply to @pjas972j "Hi! I live in the Chicago area and had trouble with my pulmonologist as well. I..." + (show)
@pjas972j

Hi! I live in the Chicago area and had trouble with my pulmonologist as well. I went to NJH several times and was very happy I did. I am now much more stable and get my care from the Bronchiectasis Clinic at the University of Chicago Medical Center downtown. I have been with them for over two years. Dr. Naureckas started many years ago treating CF patients and saw the need to expand to bronchiectasis patients. They respond quickly to emails and I have had no regrets. The hour drive from the suburbs is a pain but right now I only see him twice a year. It's much less expensive than my trips to Denver. Maybe you could go to NJH for a full battery of tests and once you are in a good place, consider University of Chicago.

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Pjas is the bronchiectasis clinic of university of Chicago where their main hospital is?

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1 reply
pjas972j | @pjas972j | Apr 11 10:37am
In reply to @lilianna "Pjas is the bronchiectasis clinic of university of Chicago where their main hospital is?" + (show)
@lilianna

Pjas is the bronchiectasis clinic of university of Chicago where their main hospital is?

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Lilianna, they are downtown at: 5841 S Maryland Ave, Chicago, IL 60637. I see Dr. Edward Naureckas. I'm not sure where the hospital is located?

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1 reply
lilianna | @lilianna | Apr 11 6:17pm
In reply to @pjas972j "Lilianna, they are downtown at: 5841 S Maryland Ave, Chicago, IL 60637. I see Dr. Edward..." + (show)
@pjas972j

Lilianna, they are downtown at: 5841 S Maryland Ave, Chicago, IL 60637. I see Dr. Edward Naureckas. I'm not sure where the hospital is located?

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Thank you

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