1. < MAC & Bronchiectasis

At NJH and need to vent

Posted by healthybon @healthybon, Jun 28, 2023

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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busybeans | @busybeans | Jun 29, 2023

What an awful experience! I can't say much more than others have but my heart goes out to you. It's hard enough dealing with this disease when you DO have physicians that are caring. I'm pretty sure I would have been swimming in a puddle of tears while pitching a little fit! Having said that, and this is not going to be what anyone wants to hear, I've been going to NJH twice, sometimes three times a year depending on my CTs, since 2011. I have never encountered what you did. I have always been met with the utmost kindness, respect, and caring. If I had ever been treated as you have been, I would never ever return. I hope that you can do as others have mentioned and glean as much as you can from this nightmare and return to your trusted physician in Atlanta. (And maybe voice your displeasure to Michael Salem, President and CEO of NJH.)

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1 reply
healthybon | @healthybon | Jun 29, 2023
In reply to @tinaesims "I'm so sorry this is happening. I had the opposite once I got there. I will..." + (show)
@tinaesims

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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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.

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healthybon | @healthybon | Jun 29, 2023
In reply to @busybeans "What an awful experience! I can't say much more than others have but my heart goes..." + (show)
@busybeans

What an awful experience! I can't say much more than others have but my heart goes out to you. It's hard enough dealing with this disease when you DO have physicians that are caring. I'm pretty sure I would have been swimming in a puddle of tears while pitching a little fit! Having said that, and this is not going to be what anyone wants to hear, I've been going to NJH twice, sometimes three times a year depending on my CTs, since 2011. I have never encountered what you did. I have always been met with the utmost kindness, respect, and caring. If I had ever been treated as you have been, I would never ever return. I hope that you can do as others have mentioned and glean as much as you can from this nightmare and return to your trusted physician in Atlanta. (And maybe voice your displeasure to Michael Salem, President and CEO of NJH.)

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Hi Busybeans…..I’m glad NJH is helping you. There ARE many positives there….I have a low tolerance for people that work in the medical field and have an uncaring attitude towards patients. I think it’s appalling. So I got enraged because it has happened so many times to me in Georgia. I’m going to see Dr Swenson in Atlanta on July 20…and requested that NJH send him my records. I want copies for myself too.

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healthybon | @healthybon | Jun 29, 2023
In reply to @nana43 "Hey Bon! I agree with scoop, you need to regroup and focus. You’ve already spent the..." + (show)
@nana43

Hey Bon!
I agree with scoop, you need to regroup and focus. You’ve already spent the money the time and the resources to be there and they are the best in their field. Get a concise question list together and go through them by bullet point if need be. Please don’t let your anxiety and disappointment ruin the opportunity to get as much information and knowledge as you can. I know you’ve done some research. Maybe you need to do a bit more with listing your questions. Keep in mind what your end goal is… no matter who we see we have to be our own health advocate. Don’t get frustrated, get assertive and prepared.
ALL THE BEST! Dee

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Hi Dee! Yes, I learned my lesson……I got so angry at the condescending tone of the dr, and the rudeness and lack of respect of the girl who was collecting my sputum samples…..It’s a learning process I think, to not let other people push my buttons. I am forming a list of questions. Next week a different Doctor, Dr Daley, will be seeing me, so perhaps I can get some answers without the intimidating tone and flippant responses.
So I have Mac, brinchiecstasis and mild c.o.p.d. I’ve never smoked..he thinks it’s cause my parents did. I’m getting a new bed where I can raise it up due to reflux. I will have the barium test results tomorrow and the barium swallow showed no problems. I am getting a vest…..and hope to start walking again. I’ve had to use oxygen here..mile high city causing shortness of breath. They tell me when I get home I’ll be ok.
How are you Dee?

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healthybon | @healthybon | Jun 29, 2023
In reply to @tinaesims "I'm so sorry this is happening. I had the opposite once I got there. I will..." + (show)
@tinaesims

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?

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1 reply
healthybon | @healthybon | Jun 29, 2023
In reply to @kwi "I’m so sorry to hear you experience at NJH is not going well. My ambassador did..." + (show)
@kwi

I’m so sorry to hear you experience at NJH is not going well. My ambassador did not make my dates but I was given his contact information after my visit was scheduled. Can’t say he was much help though with the few questions I had before going. My respiratory therapist was okay. I’d already been nebulizing a year so all she mainly taught me was to connect the Aerobika to the nebulizer.
Your best takeaway is that it is confirmed that you do have bronchiectasis and MAC which is something more than your current pulmonologist did. This and the other tests will be good information when you see the doctor in Atlanta. Be sure and request your NJH records to be sent there. Listen to Scoop and here’s hoping your visit gets better.

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I see Dr Daley next week, and have a list of questions..Dr Eddy was treating me this week. Eh!

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healthybon | @healthybon | Jun 29, 2023
In reply to @tconz "I am so sorry to hear you are experiencing such disappointment. I had excellent care while..." + (show)
@tconz

I am so sorry to hear you are experiencing such disappointment. I had excellent care while there but once I left everything changed. I am supposed to go back in November but may hold off until I find out more about your Doctor in Atlanta (much closer to me) that specialized in Mac/Bronchiactisis.
The doctors I saw were excellent and took as much time as I needed so, do you mind telling me who your doctor was (just want to make sure I don't ever get them)?
Since you are already there just absorb as much helpful information as you can and if I can help with my experience with any of the medications or equipment please don't hesitate to ask.
Again, sorry you are experiencing this kind of treatment.

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Hi Terry, The Dr in Atlanta is Colin Swenson. He has an excellent reputation re Mac and Bronk. I requested NJH forward all my records to him. I want copies too..
I was extremely angry and disappointed the day I wrote my “vent” blog. Have experienced a lot of incompetent drs in Georgia and it pushed my buttons. Patients are people , who have feelings and don’t feel well, and they should be treated with kindness and respect……..
There have been a lot of good people here and a lot of tests etc. I’m trying to think of that and not the hurtful episodes.
I didn’t know I have COPD. I really don’t have symptoms. He thinks it’s cause my parents smoked. I’m a little scared cause I have three things. Mac, Bronk and COPD. I’m going to start walking when I get home and make some lifestyle changes………I’m getting a vest and will co tinge nebulizing with 7%……..
How are you doing?

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1 reply
healthybon | @healthybon | Jun 29, 2023
In reply to @rstel7272 "Sounds like you had Dr. E The worst part of my visits to NJH was the..." + (show)
@rstel7272

Sounds like you had Dr. E
The worst part of my visits to NJH was the record transfers from my hospital just down the street, it was bad and they made it out like it was my fault and wanted to redo all the tests but NJH computers were antiquated. I did like the RT's even though they lost some test results and I had to call several,times to get my clinic notes posted.

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Yep, Dr E! How did you know? His energy is intimidating……next week I see Dr Daley …a few times, and I’m hoping he can answer some questions for me and not be intimidating and cold.

I’m trying to focus on the good I got out of the experience……I go back home on July 8th and will be seeing Dr Swenson in Atlanta. He’s an expert with MAC and Bronk.

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1 reply
healthybon | @healthybon | Jun 29, 2023
In reply to @michelleleonardo "I am so sorry you had this experience. Mine was totally different and being a nurse..." + (show)
@michelleleonardo

I am so sorry you had this experience. Mine was totally different and being a nurse I was very impressed with how the visit went. Doctors, nurses, respiratory therapists and ancillary people were all knowledgeable and helpful! (Mind you I’ve never told any of them I’m a nurse because I did not want to be treated as if I already knew most of the information). I will have to agree with others that after the visit it is hard to get return calls or emails. Be the squeaky wheel and you will get answers. I will continue to go because they are the EXPERTS in this disease. I did my research and this is why I chose National Jewish. You are the best advocate for yourself. Take away as much information as you can get. See your new doctor. Remember, the doctors are also learning daily how to deal with this disease. Every patient is unique. Be in tune to your body and keep a journal of changes. Even though I’m a nurse, I learn something new about this disease weekly. It can be overwhelming both emotionally and physically. If you need to talk or have questions please reach out I would love to help in anyway. Tomorrow is another day!

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Michelle, Thanks so much for your response and offering support. This has been a highly emotionally charged experience for me after experiencing a lot of incompetence in Georgia. Dr Swenson in Atlanta has a great rep and I have an appointment with him July 20th. I’m doing the clearance stuff and have been for several months, despite the fact that my (ex) pulmonologist said not to do it. He also said I don’t have bronchiectsasis and he was wrong. Good thing I read this blog and participate in it, because I learned everything I know from the wonderful people here. We are all in the same boat and there is such wonderful support and information here..I’m so thankful for that.

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healthybon | @healthybon | Jun 29, 2023
In reply to @wangling "Hi Bon, I am very sorry to know about your disappointing experience in NJH. This is..." + (show)
@wangling

Hi Bon,
I am very sorry to know about your disappointing experience in NJH. This is the trip you had to make to have a peace of mind, right? Now you did. Focusing on trying to get the most out of the trip. One thing you know now is that you do have bronchiectasis and MAC, so you don't have to doubt any more. Did he answer your questions regardless of his irritation? Focusing on what he said, not how he said it. Did he suggest the path you should take to deal with it? Now you have some different perspectives/opinions, to me the more information you have the better it is to help you make the right decision for yourself.
Take care!
Ling

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Hello Ling…..I am seeing a different Dr next week here so I will bring my list of questions and maybe he’ll be nicer to me. NJH As a while is a good place, but my expectations were that all the drs that treat you get together and brainstorm regarding solutions and answers. That doesn’t seem to be the case. Live and learn. I’m trying to focus on what I have learned here and proceed forward to Dr Swenson in Atlanta. I hear he’s really good with mac and Bronk and is very nice too! Imagine that! I ordered a vest..I nebulize twice a day, and will start an exercise routine when I return home. I hope you are doing well!

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