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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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Do they assume reflux could have caused MAC/Bronchiectasis or did they do some test to verify you have reflux? I know NJH advocates reflux as a cause but there can be other causes to developing Bronchiectasis. No doubt that is one of them. How do you like the Ombra system? I have an adjustable bed but not sure how to figure out the 30 degrees or more!
Straight upright is 90 degrees. So eyeball half way to straight and you are at 45 degrees. Lower it a bit and there you are! Or buy one of these: https://www.amazon.com/General-Tools-822-Digital-Finder/dp/B00563TM32/ref=asc_df_B00563TM32/?tag=hyprod-20&linkCode=df0&hvadid=242051162351&hvpos=&hvnetw=g&hvrand=11024519423108252625&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9011763&hvtargid=pla-420958531659&psc=1
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1 Reactionalso I too would like to know how Denver diagnoses GERD.
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1 ReactionThey did a barium swallow… And to be honest with you I can’t honestly answer your question because it seem like they suspected it. I’m not really clear other than that. I didn’t talk very long to the Gastro because he was so nasty and intimidating so I guess they think it’s from that. I am going to order a bed that I think it’s about $600 I can let you know what it is I already Have a mattress to put on it. I like the Ambra it’s sturdy and strong… I know it sounds crazy that I don’t know for sure if it’s the reflux but there are some unanswered questions after going there… I’m going to talk more to Dr Swenson when I see him on the 20th about it. What does he think. I’m not sure how do you know if it’s 30° maybe Google
They gave me a swallowing test with FOOD with barium extender to see if I’m swallowing straight down into my stomach which came out OK. Then they had me drink the barium and took x-rays and it showed it going all the way down but they never really got into discussing it much with me which was kind of disappointing… I don’t really know why… And as I stated in my first POST, I didn’t really ask the Gastro doctor many questions I just wanted to get the hell out of there because I didn’t like him at all. I felt like I was being given a third degree and he was not nice to me. Terrible.
There were times that I got conflicting answers from different people which was very confusing and I didn’t know how to process that either. I think they do a lot of good but at the same time there are things that took place that just made me confused.
That was not a definitive GERD test then. I think it takes an endoscopy. According to the Mayo Clinic website this is how GERD is diagnosed:
Upper endoscopy. Your doctor inserts a thin, flexible tube equipped with a light and camera (endoscope) down your throat. ...
Ambulatory acid (pH) probe test. ...
X-ray of the upper digestive system. ...
Esophageal manometry. ...
Transnasal esophagoscopy.
I have had the barium tests and Ithink they were to make sure you did not aspirate when eating (re aspiration pneumonia) - as far as I know anyway.
Most likely they do not know for sure if GERD is the cause per say. I think that may be rather simplistic if they do but then I am certainly no expert. I do know for me there were a lot of factors involved around the time my symptoms began decades ago. I had repeated bad chest colds one after the other, low D3 levels and or immunity at that time, life long GI issues so most likely also some silent reflux? A perfect storm? Who knows. I already have a good bed frame and mattress that adjust so all set there. Just find it hard to determine the 30 degrees and that seems like a lot if you want to sleep on your side! Too bad about the GI Dr. Sounds like a cardiologist I saw who spoke to me in a manor he would not have had I been male.
just to add I do think it is a good idea for anyone with Bronchiectasis to follow the rules for silent reflux as Bon outlined above.
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2 ReactionsI looked at my barium reports GI..they were good..swallow, etc........nothing stood out about reflux, so it's a mystery. I KNOW I DO get reflux, I take a femodadine and it helps a lot. It depends on what I eat. They want to make sure that it isn't aspirating I think. I don't really think I got a really definitive reason for the Mac and Bronk.
I'm trying to adjust to all of this...I'm not fully adjusted mentally to it all. I feel different and my life seems different now. And to be honest I am scared at times........My costochondritis flares up in my ribs which makes me feel breathless because of inflammation in there and it recedes when the inflammation and rib pain stop, so that adds to my anxiety and makes me wonder if it's the mac and bronk. No answers about that from NJH. Dr. Eddy said I have COPD., Dr. Daley said I don't. Some people said you are out of breath from the altitude (didnt have that so chronically in Georgia), and some told me its the Mac and Bronk. there were/are many instances where I really don't know what to believe or think.
I'm hoping that Dr. Swenson will clear some of this up for me. He's the only dr in Atlanta which is about an hour and a half from me, that is an expert with Mac and Bronk. I hear he is very nice and thorough and smart..so I have hope.
I know they want me to be checked on a pretty regular basis with sputum samples and more ct scans to compare as time goes by.
Mentally, I feel like a different person.....it's uncomfortable......I'm sure many people experience this. I'm trying my very best to do all the things suggested in clearance and exercise etc.......and in my thinking...but there feels like an underlying emotional/mental thing going on inside me that has changed my life forever.
Yes, I know what you mean about the height of the head of the bed. It was explained to me at NJH that eventually you adjust to the height of the head of the bed. I"m getting one soon.
Do you use the vest thing? I'm to use it two times a day when I nebulize. I feel pretty overwhelmed right now, but once I get myself into a schedule...maybe that will subside some. I'm sure many people on this blog feel the same way. It's all so new to me.....life is strange.....one minute you are ok and then you have "stuff" happen. Doesn't matter the age, etc.....it's just life. I should stop trying to figure out "why", because I will never really have an answer to any of it.
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2 ReactionsI wish they had done that while I was there…
I’m hoping that Dr Swenson will be able to add some more things I can to to help myself…..NJH did take a lot of tests, but they are not a panacea…….one nurse told me not to nebulize after 5 pm….no one else mentioned that to me……I usually do my second one in the evening……I’m gonna ask Dr Swenson his opinion. Conflicting advice……oy vey! I don’t regret going there. I guess they ruled out some things…..they gave me two sputum kits and the nurse said send one in every two months and when you need more just let us know in the portal. Their testing lab is supposed to be superior to others….anywhere! No answers on Mac strains yet. Not enough time. I’m so tired of thinking about medical stuff……..it’s overwhelming……..Doing my best to keep up with suggestions.