National Jewish Health Helpful Tips and my recent experience

@wangling Hello there Ling… long time no talk…

The squeeze gets out the stuff in the deep crevices down below in the lungs that nebulizing does not reach ….believe me when I tell you it is life-changing. If that stuff doesn’t come out, which it does not come out from normal nebulizing , then the bacteria has a place to grow. I ended up in the hospital two times before I learned how to do it ; and now I haven’t been in the hospital for three years and my CT scans are excellent, no progression …and even has cleared up some mucus plugs and stuff …and also my bronchiectasis has not progressed.
Lung Matters is where I learned everything I know…not from doctors AT ALL. I highly recommend you join! regards. Bon

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!

@blm1007blm1007 I don’t remember if I sent you the link on how to do the squeeze so here it is
https://www.facebook.com/kelly.kat.940/videos/462355238776400/

I 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.

@ahs389 I was at NJH in Oct. 2023. As we know all patients are different in their approach to matters and all doctors are different in their approach to matters. We have to remember that many times in our dealing with medical professionals. My experience was seamless and I was pleased with the doctors.
My understanding is that if tests are welcomed however they should not be older than six months old. So if you do go, it could give you more insight, be sure to ask and find out about acceptance of your tests and test results that you mentioned a bit before you go. Sometimes it takes time for one facility to send to another facility and as well we have to stay on top of it to make sure the facility sent and the facility received.
Barbara

@healthybon most people do not know how they got Mac. It is a collection of microbes that is ubiquitous. I’ve been on two serious rounds of heavy antibiotic and I still have it after 12 years I cannot do airway clearance, which was the main “takeaway” after visiting NJH. It causes me to have hemoptisis (coughing up blood). The main diagnostic tool has always been CT scans for me. The scans will show how much scarring and inflammation the bronc and MAC have caused and he progression, assuming you do them every six months approximately. Aspiration and Gerd are also a problem, but can be managed. I think Gerd can be diagnosed clinically.. Good luck.

@toni4501
I would encourage you to go! I feel good about my team here in Dallas but NJH started from scratch and asked questions that had never been asked before and they changed he whole direction for the better.
I stayed at one of the accommodations cited on the website. It was an extended stay suite on Virginia @ Colorado. Very convenient and safe plus I was provided with a Lyft voucher to and from each day

@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 most people do not know how they got Mac. It is a collection of microbes that is ubiquitous. I’ve been on two serious rounds of heavy antibiotic and I still have it after 12 years I cannot do airway clearance, which was the main “takeaway” after visiting NJH. It causes me to have hemoptisis (coughing up blood). The main diagnostic tool has always been CT scans for me. The scans will show how much scarring and inflammation the bronc and MAC have caused and he progression, assuming you do them every six months approximately. Aspiration and Gerd are also a problem, but can be managed. I think Gerd can be diagnosed clinically.. Good luck.