← Return to National Jewish Health Helpful Tips and my recent experience

Discussion

National Jewish Health Helpful Tips and my recent experience

MAC & Bronchiectasis | Last Active: Mar 8 4:47pm | Replies (38)
Comment receiving replies
@irenea8

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.

Jump to this post

Replies to "Most likely they do not know for sure if GERD is the cause per say. I..."
irenea8 | @irenea8 | Jul 10, 2023

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.

VIEW AND REPLY
healthybon | @healthybon | Jul 10, 2023

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.

VIEW AND REPLY