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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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I doubt if anyone on this forum has been told the exact cause of their Bronchiectasis or MAC. That is not something any Dr can know for sure. But taking a history one could speculate. The key now is prevention and avoiding further damage. I wonder why not nebulize after 5?? I do it again around 6:30.
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1 ReactionWhen my cough gets active in the evening, I will nebulize about an hour before bed. This helps me since nebbing saline makes me cough ALOT of mucus up and out of my lungs. When I do that, I can sleep without coughing my head off. So, I think it just depends on what works for you.
Do you find the first nebulizing of the day produces alot also? My first session is when I pretty much cough up everything. The evening one produces very little. But I do spend an hour all total on the first one including Aerobika.
I neb with aerobika 29 minutes in the a.m. before eating anything. And, I cough up a good amount of both clear and yellow mucus. I follow that with 20 min with my compression vest. I follow this 2x routine daily. My second nebbing session has me coughing up about the same amount of mucus. The timing of my 2nd nebbing session varies. Sometimes I do it around 4 ish but, as I mentioned, if I am feeling esp cough prone, I'll wait and do it closer to bed time. Some days are better than others. Today I tried something different while nebbing. I stopped after about 10 minutes and did some huff coughing. and then resumed the nebbing. I think that helped get even more gunk out. Best of luck to you, Irene.
It is amazing how different each person is or at least I have not heard on this forum anyone that seems to match my experience. If I were to nebulize first thing in the am nothing much would come up. It is as if it has to get to a certain point to be able to expel. By the time 10:30 am arrives I can hardly breath. It builds up fast over the morning after breakfast. I nebulize around 10:30 or 11 and usually produce around 3 ounces spending one hour total.
I totally agree with you.
I’m not really sure why she told me not to nebulize past five but I have a feeling she was insinuating that you stir things up and it could aspirate… She’s the only Soul who told me that in the whole bunch. I usually do my nighttime nebbing anytime from 7 to 9 it varies… I think everybody should find their own sweet spot don’t you lol
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2 ReactionsMy barium swallow came back OK so that’s a great question I guess it was because I told them I get it. It’s very confusing isn’t it?
Most of the time I usually cough up the same amount…
LOL, this is why we should have been paying attention in high school geometry!!