NJH Patients

Posted by clynnford @clynnford, Mar 1, 2023

Hello!

I have an upcoming appointment at NJH for outpatient treatment. I made the appointment upon first hearing about my MAC diagnosis, however...I am not feeling sick in the least! My diagnosis consisted of both CT and sputum positive results. Currently I feel like I should I delay my visit to NJH until when / if I ever feel unwell due to this condition. My kids say go now to nip it in the bud...What to do?

Cheryl

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

I had just had a CT a few months before going to NJH too. I’m concerned about the radiation too but I went ahead and had the scan done at NJH. This way they had the latest view of my lungs and bronchiectasis.

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@lilianna

I am scheduled to go to NJH in January. I received the packet and the schedule. I start with chest xray and high resolution chest CT scan and see the doctor on the third day. I believe this is a routine schedule they send. I had my CT scan in September and really do not want to be radiated again- how do you communicate this to your assigned doctor and can you avoid certain tests? Did anybody have the same situation and how did you deal with it? I would be grateful for ideas.

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NJH insists on their own CT's and other imaging. Make sure your insurance is well covered there and make sure they get prior authorizations. I had to get my prior imaging burned onto CD's and hand carry them to NJH. They still scheduled me for another CT until my Anthem insurance denied the authorization and I went back to my original provider for the CT.

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@rstel7272

NJH insists on their own CT's and other imaging. Make sure your insurance is well covered there and make sure they get prior authorizations. I had to get my prior imaging burned onto CD's and hand carry them to NJH. They still scheduled me for another CT until my Anthem insurance denied the authorization and I went back to my original provider for the CT.

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Thank you Rick for your advise. I did talk to my insurance and they said they do contract with NJH. But by your advise, I will make sure they do have insurance authorization to do any tests- I am meeting the financial adviser first thing in the morning on the first day so I will make sure they get what is needed. I already collected the last CT scan on cds plus some other tests. I am just anxious about so many xrays and that CT scan.

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@lilianna

Thank you Rick for your advise. I did talk to my insurance and they said they do contract with NJH. But by your advise, I will make sure they do have insurance authorization to do any tests- I am meeting the financial adviser first thing in the morning on the first day so I will make sure they get what is needed. I already collected the last CT scan on cds plus some other tests. I am just anxious about so many xrays and that CT scan.

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I had that run last year, 4 chest CT's, a PET, a VQ, 3 mouth/head CT's. Doc trying to give me 12 month break this year. I would not worry about 2, 3 months apart myself.

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When you got diagnosed, you had no symptoms? What caused you to get tested?

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@celia16

When you got diagnosed, you had no symptoms? What caused you to get tested?

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I had terrible symptoms 5 years ago, put into the ER & ICU. Later diagnosed with MAC with cavitation and scar tissue. My RUL is adhered to the lung wall. Currently being treated for an aspergillus infection in the lung.

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From my experience Cheryl I agree with your family. I waited until this infection had taken a serious hold on my body and found the trip to NJH combined with all the tests were extremely hard on me physically. I’m still trying to get back to where I was before the trip.

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Only God is in control...fastforward to today. I ended up getting an appointment. was all ready to go then had to cancel due to a breast cancer diagnosis... I'm through with chemo and my cancer is been completely resolved. I will have surgery and radiation. my Mac has been fine throughout all of this. I have been on an every other day antibiotic to keep it at Bay. Looking forward to maybe going to NJH, finally in 2024

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@dlynn1210

From my experience Cheryl I agree with your family. I waited until this infection had taken a serious hold on my body and found the trip to NJH combined with all the tests were extremely hard on me physically. I’m still trying to get back to where I was before the trip.

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dlynn, when did you go there? how did the high elevation make you feel? I am going in Jan and pray not to get sick there.

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Yes I was there from Oct 25 to Nov 3. As soon as the plane landed I found it a little more difficult to breathe. It was definitely due to the 5,000 feet above sea level altitude difference. I saw several people with oxygen tanks but I only needed help one day. NJH is huge and laid out crazily. You’ve heard the old saying ‘You can’t get there from here.’ That sums up NJH! Say you have an appointment for a Respiratory Therapy in room 320. You take an elevator to the third floor but you can’t get to Room 320 from that elevator. So you look for one that does.

It is COLD in Denver so take warm clothing - while we were there it snowed and was 15 degrees - in Oct! HUGE difference for this FL girl. I will say it was a welcoming relief to have doctors and other medical professionals who truly know MAC / Bronchiatasis unlike my pulmonologist in Largo FL. After reading many comments here about nebulizing with 7% saline I asked him about it as he had ordered 3% 4 years ago. He told me he had no problem ordering 7% but there has been a shortage since the pandemic. NJH said to absolutely use 7% - and as my daughter (RN for 33 years) told me it is available on Amazon with no prescription needed because no meds in it.

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