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.

healthybon | @healthybon | 2 days ago

In reply to @irenea8 "@healthybon Good to hear from you! Was wondering how you were. What in their protocol do..." + (show)

@irenea8 Helllo Irene! How the heck are you? I hope things are good.

Read the long protocol I do that I just posted to Sue....it explains everything!

How are you these days?

Bon

healthybon | @healthybon | 2 days ago

Sue, I forgot to mention..

I removed the shower head completely.....I just let it come out of the pipe..... and take my shower with one door open and make it quick. This eliminates the fine spray that can be breathed in, and leaving the door open, eliminates the steam that gathers inside the shower. I don't linger, just in and out.......They do make shower heads etc, but to me this is the best.....

blm1007blm1007 | @blm1007blm1007 | 2 days ago

In reply to @healthybon "Hi Sue... I am nebulizing 2x daily with 7% saline (sodium chloride)....I do nasal rinses daily..." + (show)

@healthybon

Hi Sue...
I am nebulizing 2x daily with 7% saline (sodium chloride)....I do nasal rinses daily with NeilMed Sinus Rinse...I purchase a box of disposable, sterile 30 ML Syringes Luer slip from http://www.bhsupplies.net. I think you get 50 in a box which is isn't bad at all..and they are reasonably priced. After one use, I toss.

I do what is called the "squeeze". It is a clearance technique I learned from Lung Matters. They have a tutorial/video on their site showing how to do it by Kelly.....who runs the site.

Ever since I have be doing the squeeze...for the past three and 1/2 years, I have had no infections except NTM. My sputum samples say normal respiratory flora. Nebulizing alone I have discovered is not enough. When the squeeze is done patiently, and properly, the technique slowly enables me to get to the very deep mucus out , on a daily basis. The gunk that comes up is disgusting looking...but because I get it up and out daily..there is no home for that nasty bacteria to grow infections....no lingering mucus inside.

Previous to doing the squeeze, I was hospitalized two times, about four years ago; because I was only getting out the stuff that nebulizing enabled me to get out. I had infections that required a cocktail of antibiotics that were administered via IV. I had to do it in hospital because my stomach can not tolerate them. I had many bouts of C-Diff prior to these two episodes and luckily that did not happen again. C diff sucks....

I tried the big 3 and could not tolerate it. I felt deathly sick, and was not willing to give up my quality of life just so I could take the meds.

My personal opinion....which is just my opinion, is that Mac usually is here to stay. If it goes away, it morphs back into a different strain...and the suffering from the meds is in vain. The good news is ...NTM can be managed with proper clearance on a daily basis. I have bronchiectasis also.

I stay active..as much as possible.......I take guafineson prescription, and if I am really congested, I nebulize with Levalbuterol. I can not do it often because of side effects, but in a pinch it really works.

I boil ALL OF MY DRINKING WATER..I use distilled from the store. I boil for at least 10 minutes sea level.. I sterilize my Aerobikas, and cups in boiling water for ten minutes, and only use them once... and then sterilize again. I put them in a Bololo bottle dryer/sterilizer, set it on dry only and dry all my equipment......I use an Ombra Nebulizing machine.

My last three CT scans have been good and many of the plugs have gone away. My bronch has not progressed. My pulmonary dr...Colin Swenson in Atlanta, was very impressed at what he saw at our yearly visits.

I initially went to the National Jewish Hospital in Colorado when I first found out I had NTM. All they wanted to do was give me those meds. Their mention of clearance and the importance of it was practically non existant. SHOCKING.....
I had a bad experience there..the respiratory therapist wanted to hang my neb equipment in a bag on the wall and not replace it each day...I knew better intuitively that bacteria GROWS..which we do not want. She was arrogant and so was my doctor...I couldn't wait to get the heck out of there....I insisted on new equipment every day and the therapist had an attitude you could cut with a knife. I complained about her and never saw her again. We have to be our own advocates..Many people are ignorant in the respiratory therapy profession...I will never understand that. I mean, what do they learn at school, if not the importance of sterile equipment?

Everything I have learned in terms of NTM and bronch has been through Lung Matters.
Regards...Hope you are feeling good. Bon

Jump to this post

@healthybon
I do percussion on my lungs/chest at the side of my breast bone .
I also am actually able to do what I would call a 'pounding' on my back at the side of my spine.
I do postural drainage in several types of positions.
I also use a type of massage mallet on my back at the sides of my spine. This helps me a great deal to loosen the mucus, get it up, and get up what I call mucus plugs.
Doing all this after, during or without nebulizing has helped a great deal.

Is there a site to go to that you can share that explains or shows what you have learned to do...The Squeeze.? How to do it.
I tried finding information showing how it is done but could not find anything.
So, if the squeeze is something totally different ,other than what we do with diaphragmatic breathing/air way clearance methods etc. etc. I would like to learn it.
Would greatly appreciate any information.
Thanks,
Barbara

healthybon | @healthybon | 2 days ago

In reply to @blm1007blm1007 "@healthybon I do percussion on my lungs/chest at the side of my breast bone . I..." + (show)

@blm1007blm1007 Hi. Go to the Lung Matters website and join you can post messages and comments and if you can’t find the squeeze, they will help you say could somebody please show me where the squeeze is in the meantime I will try to find a link to send to you.

healthybon | @healthybon | 2 days ago

In reply to @blm1007blm1007 "@healthybon I do percussion on my lungs/chest at the side of my breast bone . I..." + (show)

@blm1007blm1007
https://www.facebook.com/kelly.kat.940/videos/462355238776400/
See if this gets u the squeeze

toni4501 | @toni4501 | 1 day ago

I had for NJH next Sunday. I also have a problem with my doctors here in Virginia. I fired my infectious disease Doctor Who was very dismissive about everything. I am going to a new set of Pulmanologist locally now, so hopefully that will make a difference. I personally like my G.I. doctor very much, however, he is very dismissive of my “extreme“ reflux. He does not feel that it affects my lung disease. I absolutely do. I don’t see how it can’t quite honestly. I do sleep with my bed on an incline, but during the night as I move around in bed, I know that I’m not at that 30° or more angle and can’t help but feel that I am aspirating.
I will be seeing Dr. Lommatsch at NJH. Do you really think it was worth your while to go?
I know this sounds silly, but did you stay right near NJH? Is the neighborhood safe? I have read so many controversial comments about the area. Thank you so much for your post!

irenea8 | @irenea8 | 1 day ago

In reply to @healthybon "Hi Sue... I am nebulizing 2x daily with 7% saline (sodium chloride)....I do nasal rinses daily..." + (show)

@healthybon

I do what is called the "squeeze". It is a clearance technique I learned from Lung Matters. They have a tutorial/video on their site showing how to do it by Kelly.....who runs the site.

I tried the big 3 and could not tolerate it. I felt deathly sick, and was not willing to give up my quality of life just so I could take the meds.

Everything I have learned in terms of NTM and bronch has been through Lung Matters.
Regards...Hope you are feeling good. Bon

Jump to this post

@healthybon
The link did not work for bhsupplies. Wonder what disposable, sterile 30 ML Syringes Luer slip are for? What do you do with them? Also another question is what are the side effects you get when you use Levabuterol? I have yet to try it since I get racing heart very easily. How does it help and what side effects do you notice? It sounds like the main thing is the squeeze. So thanks for the video which I will watch. I think I already do it but not sure till I watch.

@ling | @wangling | 1 day ago

In reply to @healthybon "@blm1007blm1007 https://www.facebook.com/kelly.kat.940/videos/462355238776400/?idorvanity=786232145610757 See if this gets u the squeeze" + (show)

@healthybon, Hi Bon, good to see you back and to see you're doing well. The squeeze is to squeeze from the belly? How interesting that squeeze from the belly helps to get mucus out completely.

Ling

healthybon | @healthybon | 1 day ago

In reply to @toni4501 "I had for NJH next Sunday. I also have a problem with my doctors here in..." + (show)

@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.

healthybon | @healthybon | 1 day ago

In reply to @irenea8 "@healthybon The link did not work for bhsupplies. Wonder what disposable, sterile 30 ML Syringes Luer..." + (show)

@irenea8 hi Irene..
I attached a pic of box of syringes…. let me know if you’re able to read it clearly… I think I’ll find a link for you too and send it. I used to sterilize syringes and it was a pain in the butt but with these you just use it once and throw it away. you get 50 in a box it’s wonderful. It’s bad enough. We have to sterilize all our equipment every day, although I do mine every 14 days cause I have a lot of aerobics and cups and everything so I gather them and hold them until one big sterilizing session maybe every 10 to 12 days otherwise I would become very irritated and feel like I’m in bondage to this thing. It works out good that way it’s worth the investment. you use NeilMed sinus rinse for nasal rinses. It comes in packets that you can buy a boxof. you use sterile water, one cup , and open one little packet and mix it in. You can stir it with the sterile syringe. Each syringe is wrapped in plastic and is to be thrown out after Use ….make the water room temperature or slightly warm. Insert syringe slightly into one nostril at a time and squirt it in….and let it go all the way up gently and out your mouth. U bend your head over sink and it should come out of your mouth.. would you get the technique down? It’s a breeze. I’m gonna send you a link for it if I can’t find it, There is a tutorial on Lung Matters of how to do it then you switched to the other nostril it’s part of the protocol. It clears out all that crap that’s in your sinuses that could drip down into your lungs and cost infections. Also it’s like another layer of protection. It really feels good too because after you do it, you feel really clean up in your head, especially in Pollen season.
The levalbuterol Opens up the airways. I use it occasionally, but if I use it too much my muscles and joints hurt and if you look up side effects of it, it can do that. It doesn’t make me nervous the way albuterol would… but I don’t like the way it makes me feel …so I only use it when I think I really need it. I usually can get a lot up doing the squeeze without it. If I do use it I nebulize it first, and then I use the saline. I do not mix them together.