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.

notnancy88 | @notnancy88 | 6 days ago
In reply to @blm1007blm1007 "Glad you added to the thread. I couldn't remember that it was you that mentioned the..." + (show)
@blm1007blm1007

Glad you added to the thread.
I couldn't remember that it was you that mentioned the daily review. As with all doctors or facilities they have different beliefs and ways of doing things, for various reasons.
As I have said, I am considering going back up to NJH due to my need to see a new BE pulmonary doctor, with Dr. McShane having gone onto NIH, that understands all we need as BE patients, plus a good lab.
Barbara

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I will be seeing Dr Megan Devine at UT East Texas Pulmonary Clinic early in May. I saw Dr McShane the first week of February. She had been seeing me since January 2023. I will post how the visit goes with Dr Devine. If you have Bronchiectasis and NTM, I believe being proactive with all Airway Clearance methods and being compliant is so very important.
2013-2022 diagnosed but asymptomatic. Sept 2022 - present symptomatic.

REPLY
jill6063 | @jill6063 | 6 days ago

Hi Doberdoo -
I am from NJ and have a great doc in New York City, but I wanted more - more education, more thorough investigation as to what may be causing my MAC, etc. I heard about NJH on this forum and called and made an appointment and I am here right now! I plan on making a list of all of my takeaways to share with the forum when I complete this journey.

All I did was call and ask to learn how I could come as an out-of-state patient. They took my information and then a nurse called and asked about my background, history of disease, treatment, etc. She said someone would be in touch if I was "accepted" into the program. I asked her if not everyone is accepted, and she said that sometimes, if someone is receiving comprehensive enough care, they do not accept them. I then was told I was accepted and was assigned an ambassador who was available to provide more info about the program. She was available to me up until the day I arrived here. It really was as simple as that. I HIGHLY recommend it. I also learned that once you are an out-of-state patient here, they will track your case, you can send quaterly sputum samples to them (their lab is more thorough than my run-of-the-mill Labcorp results), and that you can come back each year for a two-day follow up (one day of testing and one day of meeting with docs to go over results, etc.). I hope this is helpful - just call - you won't regret it!
Jill

REPLY
1 reply
doberdoo | @doberdoo | 6 days ago
In reply to @jill6063 "Hi Doberdoo - I am from NJ and have a great doc in New York City,..." + (show)
@jill6063

Hi Doberdoo -
I am from NJ and have a great doc in New York City, but I wanted more - more education, more thorough investigation as to what may be causing my MAC, etc. I heard about NJH on this forum and called and made an appointment and I am here right now! I plan on making a list of all of my takeaways to share with the forum when I complete this journey.

All I did was call and ask to learn how I could come as an out-of-state patient. They took my information and then a nurse called and asked about my background, history of disease, treatment, etc. She said someone would be in touch if I was "accepted" into the program. I asked her if not everyone is accepted, and she said that sometimes, if someone is receiving comprehensive enough care, they do not accept them. I then was told I was accepted and was assigned an ambassador who was available to provide more info about the program. She was available to me up until the day I arrived here. It really was as simple as that. I HIGHLY recommend it. I also learned that once you are an out-of-state patient here, they will track your case, you can send quaterly sputum samples to them (their lab is more thorough than my run-of-the-mill Labcorp results), and that you can come back each year for a two-day follow up (one day of testing and one day of meeting with docs to go over results, etc.). I hope this is helpful - just call - you won't regret it!
Jill

Jump to this post

Thank you Jill. I did call and had my phone interview. Am now waiting to hear if I am accepted. Maybe not because all treatment is complicated by the fact that I have a serious heart condition called QT Prolongation. All of the Big 3 and other treatments CAUSE QT Prolongation so there is a strong chance that any treatment will kill me. They may decide, as Northwestern did, that there is nothing they can do as a result. I am in a lose/lose situation - die either way.

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