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At NJH and need to vent
I had very high hopes coming here. The Ambassador screwed up all the dates and ended up planning our first day as the day we fly to Denver. It was a stressful Nightmare. I had to change all the reservations and it cost me a lot of extra money. I figured just be glad you are going and try not to dwell on that. Unfortunately the nightmare has continued. Yes they test a lot. When I saw My doctor ( infectious disease) he was very curt, and hard to talk to. My husband agreed. I told myself if he’s a good dr just focus on that. So he met with me today to go over the ct scan . My pulmonary in Georgia told me I don’t have brochiecstasis , you know, the same guy who said don’t nebulize. I just found out I do have that as well as Mac . The dr was rushed and somewhat irritated with all my questions. It felt uncomfortable . He did want to address the other items not his expertise.
The respiratory therapist is s space cadet who offered NO suggestions. She brought in s different aerobika and left it on the counter overnight. The collect three samples one per day. Second day she handed me the dirty aerobika yo give thenext sample. I figured she would who out a clean one. I said “ I brought one from home I’m not using that dirty one”. Then the BIG LIE CAME AND. I QUOTE”. I told you to wash it. Air dry it and put it in a drawer”. I CAME BACK AT HER AND SAID” no way did you say that to me..”. BELUEVE ME SHE DID NOT SAY IT. She refused to own it and talked to me disrespectfully not to mention that she was ok with me reusing a dirty aerobika with the previous days remnants of saline in it”. She made no effort to talk to me about air clearance tips., which is so important as u all know. I spent a frigging fortune to go here and I’m very disappointed. Boy was I a fool. I’m going to dr swendon ATLANTA great reputation Mac and Brock. Maybe hr’ Ok be more helpful. I could could just cry from deep disappointment. The dr said said it’s up to you to ask the resp therapist questions. Bullshit
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Hi Marian….I actually have an appointment with Dr Swenson on July 20. Thanks for sharing info about him. I hear he is very good with mac and Bronk. I’ll be sure to get my NJH records to him as well as previous ct scan discs………
Do you live in Atlanta? I live in Blue Ridge! Does Dr Swenson check your sputum periodically?
Thanks for your response Marian..I’m looking forward to my appt with him July 20th. Do you have brinchiecstasis and Mac?
I know Dr E pretty well. How did you get into Dr Daley so quick? I went back to my Uchealth ID for now. We'll see how that goes then maybe I will request Dr Daley or Dr K
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1 ReactionI do. I've been treated for MAC once and it's back to I'm going to start treatments again in August where I live. They did diagnose me with CF. It's been almost 2 months and they still have not referred me to the CF clinic close to me. My pulmonologist here is going to refer me.
Dr. E out next week so they scheduled me with Daley
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1 ReactionIt seems the main complaint I have read about NJH over and over is the lack of follow up. I guess they are usually good for initial work up and diagnosis. To me Dr Swenson sounds like a way better choice for ongoing care.
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2 ReactionsA question for you Georgia folks, why NJH instead of Mayo/Jacksonville? I'm considering a move to the southwest from Colorado myself. My spo2 in the gulf coast is 98%, while in Colorado it is 90%. I'm 65 and active.
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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4 ReactionsI am actually doing well and while at NJH they added the vest and inhaled Amikacin to the
Big 3. So far no side effects from Amikacin.
I know you mentioned seeing Dr. Daley next week (he was one of my doctors) and I think you will really like him. He always spent as much time as I need and answered all of my questions. I really hope your experience with him will be much better than what you described earlier.
Just keep absorbing all the positive/informative info and you will come home with a wealth of knowledge on this disease/treatment.
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2 ReactionsYes, I know how draining traveling to NJH is. Where I live in Georgia it’s slim Pickens for good doctors. I did find a Mac Bronk specialist Dr Swenson in Atlanta, and have an appointment on July 20. May I ask you, are u on or have you ever taken the big 3? Do they want you to?
Dr. Eddy at NJH told me the other day I have CO P D. As well as Bronk and mac. Today he told me he’s not sure I have COPD AND I was a basket case last night of fear; because he told me I had it and wasn’t sure. Thank God I am seeing Dr Daley all next week until I leave on the 7th. I want his opinion. I am very surprised I would be told this and the dr not be sure. Very upsetting.