1. < MAC & Bronchiectasis

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

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lilianna | @lilianna | Oct 31, 2023
In reply to @dlynn1210 "We are staying at the Hilton Hampton Inn , 4150 East Kentucky Avenue in Denver. Nice..." + (show)
@dlynn1210

We are staying at the Hilton Hampton Inn , 4150 East Kentucky Avenue in Denver. Nice hotel and a discount for those seen at NJH. There is an altitude difference here which affected my breathing and it is cold! It was 15 and snowing on Sunday. I purchased bags for sterilizing our devices in a microwave. I have a frig and microwave in my room. I traveled here from FL so I know what you are experiencing. Just an FYI - The hotel is close to NJH and we told they are booked solid. I wouldn’t wait to book your room if you decide on the Hampton Inn.

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Thanks for the information. Did you rent a car or you walked? I don’t do well in high altitude - headache- but i will have to survive it I guess. It’s 12 days so where did you have your meals? I am nervous because I am afraid of change of my routine.

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lilianna | @lilianna | Oct 31, 2023
In reply to @rstel7272 "I had to personally visit UCHealth and fill out forms for hipaa and request all images..." + (show)
@rstel7272

I had to personally visit UCHealth and fill out forms for hipaa and request all images on cd/dvd.
I also too printed copies of every visit note and test result. Record transfers are one of NJH weaker points. This took over a week to get them and I hand carried them to NJH only to have Dr E complain to me he could not read them in the office and had to make the long trip (down the hall) to radiology where they could read them. One of the reasons NJH likes to duplicate every test you had prior so make sure your insurance is covering NJH 100% because their charges are about 4 times higher than a regular hospital.

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Hi Rick, I already started collecting CT cds and notes. Thanks for the advice to check with my insurance how they cover NJH. It’s so much to think about I only hope this visit will happen and will be worth the effort.

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dlynn1210 | @dlynn1210 | Oct 31, 2023

No walking to NJH. We rented a car from Enterprise - a shuttle will pick you up at the airport. The hotel has a breakfast buffet that is really good - scrambled eggs, sausage, waffles, Etc. There are several restaurants around for dinner. Valet parking once you are at NJH. Wheelchairs right inside the doors. I was hesitant also and the travel has taken a toll on me. Combine the altitude with 15 degrees and snowing - not good for this FL girl. If you need oxygen they will provide it - I did one day.

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2 replies
dlynn1210 | @dlynn1210 | Oct 31, 2023
In reply to @dlynn1210 "No walking to NJH. We rented a car from Enterprise - a shuttle will pick you..." + (show)
@dlynn1210

No walking to NJH. We rented a car from Enterprise - a shuttle will pick you up at the airport. The hotel has a breakfast buffet that is really good - scrambled eggs, sausage, waffles, Etc. There are several restaurants around for dinner. Valet parking once you are at NJH. Wheelchairs right inside the doors. I was hesitant also and the travel has taken a toll on me. Combine the altitude with 15 degrees and snowing - not good for this FL girl. If you need oxygen they will provide it - I did one day.

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The Hampton Inn is no small place - six stories high and fully booked through next week.

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dlynn1210 | @dlynn1210 | Oct 31, 2023

I will say going from a pulmonologist that knows nothing - zero - about MAC back home to NJH they are definitely on top of it here!

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dlynn1210 | @dlynn1210 | Oct 31, 2023
In reply to @dlynn1210 "No walking to NJH. We rented a car from Enterprise - a shuttle will pick you..." + (show)
@dlynn1210

No walking to NJH. We rented a car from Enterprise - a shuttle will pick you up at the airport. The hotel has a breakfast buffet that is really good - scrambled eggs, sausage, waffles, Etc. There are several restaurants around for dinner. Valet parking once you are at NJH. Wheelchairs right inside the doors. I was hesitant also and the travel has taken a toll on me. Combine the altitude with 15 degrees and snowing - not good for this FL girl. If you need oxygen they will provide it - I did one day.

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I forgot to add that the buffet is free.

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sallyb827 | @sallyb827 | Nov 1, 2023
In reply to @rstel7272 "Sallyb, How are the pulminologist's in Jax? I am relocating to the panhandle. I stopped NJH..." + (show)
@rstel7272

Sallyb, How are the pulminologist's in Jax? I am relocating to the panhandle. I stopped NJH earlier this year.

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I like the pulmonologists at Mayo. There are several that are very good.

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1 reply
regen99 | @regen99 | Nov 2, 2023
In reply to @sallyb827 "I like the pulmonologists at Mayo. There are several that are very good." + (show)
@sallyb827

I like the pulmonologists at Mayo. There are several that are very good.

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which Mayo? I have been told that some are far better than others....

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sallyb827 | @sallyb827 | Nov 2, 2023

The one in Jacksonville, Fl. Is where I go because I live here. The one in Rochester is the best.

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lilianna | @lilianna | Nov 15, 2023

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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