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← Return to At NJH and need to vent
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I'm so sorry this is happening. I had the opposite once I got there. I will agree the ambassador's are no help at all!!! My respiratory therapists were kind and loving. I hope you get one of the kind loving ones!!! My doctor sat and talked and listened. I also saw a CF doctor that was certainly a jewell!!!! Dr. Griffith called me at 5:00 last Friday night to tell me the results of the genetic testing. My problem has been the after care. I don't blame the doctor. Other than the doctor calling me, there have been no referrals like they said they were going to do. My local pulmonologist said he would happily do that for me. I am supposed to go back in August but have decided to cancel the appointment. Not because I'm unhappy with the care there but they have done what they can do and the local people (that are excellent) can take over from here. I will admit the lack of communication following my appointment has been frustrating.
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Do you have Mac and Bronk?
Unfortunately I agree that NJH's after-care is abysmal - and I've been going there a long time at least a couple of times a year. My problem is that where I live there is only one pulmonologist knowledgeable about NTM, and the radiologists who read the scans don't seem to understand what they're looking at. This is why I continue to return to NJH. I know the radiologists/physicians there know exactly what bronchiectasis, NTM tree-in-bud, and cavitary nodules look like. My ID doctor goes through my scans with me slice by slice so I'll see and understand what he's seeing. Based on NJH's radiologist's interpretation and the doctor's report I am able to achieve a level of acceptance based on fact (even when new stuff pops up). I really wish I didn't have to make the journey to Denver; it's an expensive, time-consuming, and exhausting drive (I still won't fly). I'm headed there in 9 days. Wish me luck!
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Thanks for sharing your experience with me. I have mixed feelings about NJH. I was very angry when I wrote my vent. I have experienced so much incompetence in the medical field in Georgia; my expectations were very high going to NJH. I learned, that no matter where you go there will usually be a mix if good folks and bad. It’s just the way life is. I expected perfection..and the incompetence of some of the people pushed all too familiar buttons.