National Jewish Health Helpful Tips and my recent experience

Posted by healthybon @healthybon, Jul 9, 2023

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

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

sweethighland | @sweethighland | 1 day ago

In reply to @healthybon "@toni4501 hi toni. I will try to answer your questions. I know from belonging to Lung..." + (show)

@healthybon

@toni4501 hi toni. I will try to answer your questions. I know from belonging to Lung Matters that reflux and stuff can definitely affect your lungs because you aspirate stuff into them especially when sleeping. You probably shouldn’t eat anything after 6 PM.

I will be honest with you, but I don’t want to influence or dissuade you from going to NATIONAL JEWISH. If I had a to do again, I wouldn’t. I am blessed to have a wonderful PULMONOLOGIST here in Atlanta, Dr Swenson my entire experience at NATIONAL JEWISH was very negative. There’s a lot of things that happened there that I was not happy with and I couldn’t wait to get the hell out of there, if you want me to tell you more details write me back as far as staying in a hotel we stayed one in cherry something that was supposed to kind of be affiliated with NATIONAL JEWISH and the rooms were so dusty. I don’t think they ever change the AC Filters. We literally had to go to target and buy a little vacuum cleaner and dust vacuum the room every single day because you could write your name on the furniture and on the floor in the dust, not to mention the filthy drains that backed up hair from probably yours it was disgusting.
I didn’t know anything at first when I got this or should I say found out I had it. But the doctors at NATIONAL JEWISH didn’t teach me a damn thing and all they wanted to do was shove medicine down my throat. They spent about 1% of their time talking about clearances, which is really the most important thing you should know and do you’ve got to get that mucus out of your lungs every day because if you don’t, you’re gonna get infections plain and simple the bacteria lives in the mucus, but if it doesn’t exist in there, and you clear it out every day, they have no place to live and you can pretty much assure yourself that you will not get an infection. I can’t stress enough how important this is.
https://www.facebook.com/kelly.kat.940/videos/462355238
776400/?idorvanity=786232145610757
If you really want to clean your lungs out way down deep in the Bellows and crevices where nebulizing doesn’t reach, I suggest you look at the above video and learn how to do it. It changed my life if I can help in any way just contact me.

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@healthybon Hi Bon, are you on Brinsupri too? I remember you also saw Dr. Ali. Or are you seeing both doctors?