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MAC & Bronchiectasis | Last Active: 6 days ago | Replies (33)

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@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

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Replies to "Hi Doberdoo - I am from NJ and have a great doc in New York City,..."

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.