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Center of Excellence for MAC and Bronchiectasis
I went to NJH in Denver in Jun 2022 for an assessment for recently diagnosed MAC and bronchiectasis. All went well during my week-long assessment and I was thrilled to have Dr Kasperbauer as my ID. Unfortunately, most interactions with NJH have gone downhill - fast - since returning home. Now, this straw has broken the proverbial camel's back - portal messages to my providers are being intercepted, my messages are either not getting to my providers or the providers are being unresponsive. Shockingly, I am denied telephone discussions with my providers. As such, I'm looking for a Center of Excellence on my conditions, preferably closer to Las Vegas. Does anyone have any recommendations and good experiences to share? Thank you!
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Same here. I have been going to NJH since 2009. I used to get email response with in 2-5 days and occasionally doctor gave me a call but not the case lately. This have made anxiety worse on top of dealing this devastating disease.
This seems odd, doesn't it? The communication was always good so I'm baffled by the change. I know the doctors are stretched pretty thin these days so I never even expected less than a week turn around with a response, but NO response at all certainly pushes my anxiety right off of the chart. If Covid didn't target our already extremely vulnerable lungs, it wouldn't be an issue. But here we are...thank you for replying...it helped me feel a little less alone.
There is a list of knowledgeable doctors on NTMInfo.com. It is set up by state and could be a good beginning point.
https://ntminfo.org/united-states-of-america/Oh great. I haven’t even gotten in to NJH and I’ve had trouble with scheduling and people responding. I finally am going end of January to beginning of February. I’m nervous now if they are not responsive. I am scheduled with Dr. Kasper Bauer as well. They gave me a 2 week window for testing?
I'm sorry to add to your stress level...that wasn't my intent. I spent two weeks at NJH for testing when I originally went in 2011. Everything was exceptional! I felt listened to, cared for, and like I was in the best possible hands. Otherwise I wouldn't have continued to go there every three or six months since then. I don't have the same doctor so perhaps your experience with him with will be different than mine. I do know that with Covid and with the uptick in NTM cases the doctors are stretched pretty thin. But I truly wouldn't trade my experience at NJH for anything. So deep breaths and know that although there may be a few communication bumps along the way, once there, it'll be good!
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2 ReactionsThank you for that!
I just returned for a follow up at NJH, my third visit. It was busier than before and one of the staff commented that it picks up closer to year end. It can take persistence to connect with them at times but I have always found the care exceptional. And I plan to continue going.
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2 ReactionsFor those who have gone to NJH, can you tell me a ball park figure of what it will cost? I know my Medicare/Supplemental will cover the medical part. Just wondering coming from east coast, with airfare, lodging, meals, etc. And were you there one week or two? Thanks!