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National Jewish Health Helpful Tips and my recent experience
I just returned from two weeks at NJH. IN A NUTSHELL…LOTS OF TESTS…..saw Infectious Disease Dr ..Dr Eddy….saw. Pulmonary Dr Daley….
****saw Gastro Dr who I wouldn’t recommend to a dog. He was harsh, arrogant, condescending, and I didn’t like one thing about him, his demeanor, attitude etc. If you want to know his name private message me…….I couldn’t wait to get away from him. They ought to unload him..he’s a bad apple and doesn’t reflect what NJH is all about, in my opinion.
I learned that my reflux could have caused the Mac. Aspiration into the lungs! Recommendations..get a bed where the head of the bed is at least 30 degrees on an incline, otherwise the stomach contents can aspirate into the lungs.
If you nebulize first, then eat. If you eat first, wait three hours before you nebulize. Don’t nebulize too close to bed time. Don’t eat three hours before bed time. I use 7% saline. I use Aerobika, I then use Ombra with aero eclipse xl cup by itself….all while I have the vest thing going….., I then use autogenic app for four to six minutes.
I purchased a Hill Rom. “THE VEST AIRWAY CLEARANCE SYSTEM.” I opted for the wrap, …the vest exacerbated my fibromyalgia. I use that with the nebulizing. It’s supposed to shake loose the stuff in the lower part of my lungs, Per NJH. $15,000.00. From what they tell me insurance will pay for most of it. I’m glad I got it. The company comes to your home to deliver it, and shows you how to use it.
THIS IS ALL SUGGESTED BY NJH because I am not doing the Big 3., which helps many people, but….there is no way my system could tolerate such strong meds…God bless those who are able to tolerate the meds and get rid of the Mac………it can come back from what I am told. In my case it would annihilate me….I can’t even take penicillin for a few days without getting deathly sick.
It is suggested I start aerobic walking daily……very important for lungs they said.
I have to avoid foods that exacerbate the reflux. Very important.
They told me I also have Bronchiestasis, which my local pulmonary said I did not have. I was devastated when they first told me about it,..it was a shock. Come to find out a lot of people with MAC have that too. This is all a process of adjustment, having a lung illness. I’m going to take all suggestions to help myself……religiously……..
I was given two sputum kits to send in every two months for analysis by NJH. Then I can request more in the portal when I need them. They consider me a patient now and I can communicate with concerns through the portal which is a comfort.
There were many other tests I had done. It was worth the trip, but I was exhausted. Grueling, but worth it!
The altitude in Denver got to me immediately, and I was extremely out of breath. I had to use oxygen the entire time I was there. It scared me, big time, but now that I am home in Georgia it is much better. Some people adjust and others have this experience there.
I see my new Mac Dr, Dr. Swenson, in Atlanta on July 20th, and will be in his care. He is friendly with Dr Daley……..and is thought highly of by Him. Dr Daley said he will be seeing him and he is going to discuss me with him, so I was grateful for that.
Overall, the experience was good……..worth the trip..learned a lot, they ruled out a lot……
I highly suggest that if you find an employee who is not treating you correctly you report them to the nurses immediately. The first respiratory girl sucked….she had her nose in her cell phone and was very rude to me. It was appalling how she spoke to me….I reported her and never saw her again. ALWAYS ADVOCATE FOR YOURSELF, NO MATTER WHERE YOU GO. There’s always at least one rotten apple in the batch…don’t let ‘em get away with it. It’s YOUR LIFE, YOUR HEALTH…..stand up for yourself.
I’m glad I went, but more glad I can see Dr Swenson from now on in my own neck of the woods. In my opinion, most pulmonaries are ignorant when it comes to Mac and Bronchiestasis..at least my local drs are…so find someone who is knowledgeable.
I hope this was helpful to you and would be happy to share any of my experience with you if you have questions. I’m sure every persons perceptions are a little different, but I hope this will somehow be helpful in some way. Bon
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@healthybon sorry, I’m not seeing the link to be able to watch the video you spoke of. When I tap on the link address, nothing happens. I would love to watch! Thank you, Toni
@smtdoc I tried to look up the extended stay that you mentioned on Virginia at Colorado and don’t find anything. Can you elaborate? Was it near the hospital?
An IHG property, I believe it’s called Sharewood Suites on Virginia@ Colorado- may show up as being in Glendale, a suburb, but it is still a 7-10 minute drive to NJH
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1 Reaction@healthybon I will! Thank you!
@smtdoc thank you!
@healthybon none of these sites work. By that I mean the one you say opens a video on lung clearance. Please let me know . Thank you!
@toni4501 Not healthybon here, but perhaps I can explain why the links do not work. The Lung Matters group is private, and you must join it before you can see anything there. Many people on Connect have checked it out, and found the rigid protocol prescribed by the owner of the site does not in any way account for individual differences.
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2 Reactions@toni4501 you have to join the site but also read a lot of sections. The airway clearance info is excellent. I take their other advice with a grain of salt. I feel it is taking our precautions to the extreme. I could be very wrong but I feel like the time and effort they expect is not worth the possible results.
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4 Reactions@sueinmn ohhhh! Thank you! I’ll join right now! Thank you, Sue!