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.

@dlynn1210

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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Thank you for this information; I hope my appointment will happen and I will survive it- but I must say I am super anxious.Did you have a battery of tests (my first day starts with chest x-ray, CT, third day esophageal x-ray and one more xray- plus all other tests and meetings) Did you have the same?

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I had similar tests. We rented a car from Enterprise - a shuttle picks you up at the airport. You pull up for ‘free’ valet parking (tips appreciated - take several $1 bills). Wheelchairs available inside that building - it is also where you check in. One appointment I had was with respiratory therapist but it was about a vest which I already have a Hill Rom vest ordered by my infectious disease / pulmonologist ordered for me. A lot of tests but there was a welcomed two day break with no tests. You will have times of several hours of waiting for your next test. All I can say is having my daughter with me was a God send. I could not have made it walking everywhere required. I have gone from 125 lbs last year - my norm to 86 lbs since last year. I held my own for 3 years but last year I lost ground and now I am extremely weak.

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@lilianna

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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How is your Spo2 at low elevation? Expect it to drop 4-8% here in Colorado. If you do not bring a POC, watch that first 24 hours, take it very easy, wheelchair when possible. You body will acclimate but it takes some time. I live in Colorado, each time I leave the state, the return trip gets tougher.

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@rstel7272

How is your Spo2 at low elevation? Expect it to drop 4-8% here in Colorado. If you do not bring a POC, watch that first 24 hours, take it very easy, wheelchair when possible. You body will acclimate but it takes some time. I live in Colorado, each time I leave the state, the return trip gets tougher.

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Rick what is Spo2. My saturation level is usually 94, 95

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@lilianna

Rick what is Spo2. My saturation level is usually 94, 95

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Same thing. "The “SpO2” reading on a pulse oximeter shows the percentage of oxygen in someone's blood." Expect it to drop in Denver so take it very easy at first. NJH will do a 6 minute walk test, I dropped to 82% last time but I finished the walk.

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Is NJH National Jewish Health? Is it the best place to treat MAC?

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Hello, how do you qualify for a vest? I asked my pulmonologist and she said I do not qualify- you need to have at least two infections during a year while having bronchiectasis. She also thinks it could be hard on my ribs since I am only 103 pounds. Who has any experience with a vest? I would be grateful if you shared with me how you reacted to using it.

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@dlynn1210

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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dlynn, what did you do with your compressor and nebulizer and all other equipment and meds when you flew? Where you able to keep all in your carry-on bag? I heard you can get a note from your doctor so you are allowed to have it on you.

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My local pulmonologist asked me two months ago how I felt about going off of the big 3 for a period to give my body a rest. I agreed after having been on them for four years. Dr. Ferra at NJH told me to remain off for now that it was possible my system had built up a resistance to them. Once their culture results are provided they will treat with the meds to determine whether they are working. No use taking if they are hurting me more than helping (hearing has taken a serious hit). So no meds included for me.

It was a drawn out process of whether to take my vest and unit. First the unit is heavy and the carry case that came with it is also heavy. We either had to put it into an overhead (keeping in mind the weight) or trust baggage handlers with it. I just received it a few months ago and they are very very very expensive so I left it behind. A nebulizer fit inside my carry on wrapped in bubble wrap.

I’m not sure what you are referring to needing a doctor’s note to have on us. The woman who delivered my Hill Rom vest told us they fly free but since I chose not to take mine it wasn’t an issue. Maybe if you are considering taking one then to fly free as extra baggage might be considered.

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@dlynn1210

My local pulmonologist asked me two months ago how I felt about going off of the big 3 for a period to give my body a rest. I agreed after having been on them for four years. Dr. Ferra at NJH told me to remain off for now that it was possible my system had built up a resistance to them. Once their culture results are provided they will treat with the meds to determine whether they are working. No use taking if they are hurting me more than helping (hearing has taken a serious hit). So no meds included for me.

It was a drawn out process of whether to take my vest and unit. First the unit is heavy and the carry case that came with it is also heavy. We either had to put it into an overhead (keeping in mind the weight) or trust baggage handlers with it. I just received it a few months ago and they are very very very expensive so I left it behind. A nebulizer fit inside my carry on wrapped in bubble wrap.

I’m not sure what you are referring to needing a doctor’s note to have on us. The woman who delivered my Hill Rom vest told us they fly free but since I chose not to take mine it wasn’t an issue. Maybe if you are considering taking one then to fly free as extra baggage might be considered.

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Thank you, I do not have a vest. I was asking about the regular equipment- a nebulizer, a compressor and meds. Thank you though

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