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rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,925
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
Okey dokey, I've got aspiration pneumonia again... I'm not sharing this for sympathy, but rather seeking some feed back. I'd already sent BethU a message, about some other things we were talking about, and also wrote this to her ~ I'm copying and pasting because its easier....

...today when my larygologist purposefully touched the opening of my wind pipe with the scope (she was doing the videostroboscopy to check out my vocal cords) she said I had almost no gag, it was weak and very delayed. She said it took me a full 10 seconds after she touched it to have any sort of reaction, when I should have had an instantaneous cough. Now, how the heck am I supposed to keep liquids and food out of there if I don't even have the urge to cough when she's prodding it with a hard object! She said until I can get in to the speech pathologist for a repeat swallow test and swallow therapy she wants me to give a sharp cough every two bites of food or liquid that is swallowed. (that should go over well in restaurants, right?)

Seriously, what am I going to do, if I can't sense stuff entering my trachea!

I'm so not happy about this. It isn't any big surprise, I knew it already, but nothing like having it confirmed. You know how if we drink a large drink that is cold, eventually we can be aware of our stomach feeling cold? ... A couple of days ago I was drinking a smoothie, ~ it was a "double" I'd made a huge one.... I actually could feel the coldness from it spread out diffusely in the left side of my chest I kept trying to convince myself that I was imagining it, except that this is something I'd never even considered (feeling the coldness). But this is just an example, I think all liquids are making it in a little bit, and what with taking in such a long drink all at one time I think I messed myself up more.

Still waiting to be scheduled for follow up swallow study, and for the swallow therapy afterward.

My question is, is this a genuine bad thing, or just something else that I'll be able to find ways to compensate for. :| and any suggestions are welcome. (I'm already tilting head forward, leaning forward - when I remember to of course) does anyone here really make themselves cough sharply after a few swallows, and if so, how well does it work for you?

thanks

Going to try to eat/cough some soup now ...:)
 
Rose ... this is such a crazy and scary problem. There HAS to be a way to keep from aspirating besides the tube. Is it possible that a mechanical device could be designed to shield the airway? I don't know the structure of the throat well enough to even picture what it would require.

Normally, anyone would gag something like that out, but for those of us without a gag reflex, it might work . . .

Does it only happen with fluids? I hope somebody on here has some experience with this !
 
Hi Rose,

I dont have anything but support! You have been there for me and I just want to say that I am there for you.

More important, can you drink wine? I hope so!

Take care

april
 
Hi Rose,

I dont have anything but support! You have been there for me and I just want to say that I am there for you.

More important, can you drink wine? I hope so!

Take care

april

April,...You are a sweetie, and yes, I've got a glass of Klinker Brick 2005 Zinfandel (red) at this very moment. I think it mingles nicely with the Omnicef (Cefdinir) LOL

Beth,... I know, never paid that much attention to the anatomy of the larynx, who knew I'd ever care?

The weirdest thing is that I'm totally convinced that my problems aren't that bad, so why is it that this is the second bout with pneumonia since May....:?

Last night, when I discovered that I could not breath while laying down (as in at all!) I went into "Clean My House So That No One Will Find Me Dead and Naked, or With a Messy House" mode....

...can you tell the antibiotics are already kicking in!
 
Rose,

I admire your sense of humor. You remind me a lot of my younger sister, Barbie. She's a hoot, too!

Kim
 
Hope you can kick this thing soon. Take it easy !
 
Rose, I am so sorry to hear about these latest developments. I hope there is something the speech pathologist can recommend and that your pneumonia takes a hike soon.

Lydia
 
I feel so bad for you Rose.... Do you have no concept of having pneumonia because you do not have a cough, what about a fever? This sounds morbid but i just thought about what you wrote, its like one point in our life we are frantically getting our homes and body ready to bring in a life and the next we are doing it to prepare for the ending. Not that it compares to you, but when my gallbladder acts up its so painful and it makes me so full that it makes my breathing harder and more noticeable. I will fall asleep and wake instantaneously in a panic thinking i was about to die... When i do not have the gallbladder attack my breathing is only altered with strenuous physical activity.. So i do not awake with a panic.. Keep us posted Rose because we all care about you so much. Sammantha
 
hi Rose. Sorry you're under the weather. Somebody posted here recently about laryngotracheal separation. I moved it back up top. It may be an option.

AL.
 
Rose-

Make sure you get plenty of good rest- and don't stay in that cleaning mood too long- if your dust bunnies are like mine, they don't like being disrupted!:lol::lol::lol::lol:
Seriously, take care of yourself and keep us posted,
hugs and coughs your way,
brenda
 
Rose,

Your reason for the house cleaning reminds me of why I wear clean underwear every day. I'd hate to be caught dead in any unclean undies! I mean, how embarrassing!:-D

Zaphoon

(shucks, my signature just isn't the same anymore...)
 
Hi Rose...I am so sorry for this scary situation that you are in! I wish I had the words to make you feel better.
 
Hi Rose,
I am so sorry to hear that you are not feeling well, I hope this gets resolved soon

And hey, you and April drinking wine and not inviting me...........hhhmmmm, Well I do have a bottle of layer cake and it is yummy...........Every time I see a post from you I think of my ex sil, she worked for Continental and when Freddie toured we would have to fly, I am scared to death to fly..........Well my sil was a stewardess, I would literally have to drag myself on that plane, but she would always move me next to her station and start loading me up with "cocktails" I remember all the other passengers looking at us like we got the VIP treatment, because she would literally start me to drinking before the plane left the runway. She used to tell everyone that if I didn't have a drink the flight would be scary for everyone involved................I always think of her, she was a doll.

I hate that bad things have to happen to good people, just know that I am thinking of you and hope and PRAY that this works out for you!

And if you and April are going to be drinking wine.....hhhmmm let me in on it.
Freddie will drink some Merlot through his tube on Fridays......too funny
Your Friend
netty
 
Netty, I loved reading about your take on flying ~ I always made sure to take care of my people too ;)

... Perhaps we all need to have a cocktail hour on here sometime. What a concept. Maybe on Fridays when Freddie has his "glass" :)

Thanks for your well wishes each and every one. I'm not kicking it as fast as I want to, but feeling the best right now that I have for a few days, which is a good thing. I've been reading the latest John Le Carre` spy thriller: A Man Most Wanted and its the absolute best fiction I've read in a while. It makes it easier to keep resting like I'm supposed to.

NY Eye & Ear Infirmary finally called to schedule the swallow study for this Friday, don't have a time yet though. This is a test I'm actually looking forward to as it should give us all some answers.

Sammantha, I knew I was sick, and do have a cough. My vocal cords don't close tightly, as they are atrophied, so there's that "gap" and the trouble is that I don't seem to feel if there is something entering my trachea, so because that reflex is greatly diminished I don't cough then, (and thus help shoot it back out again)..... I eventually become vaguely aware if a little liquid gets down the wrong way, but I have to make the conscious effort to cough, rather than it happening automatically. I don't think I always know it though. This is different than choking episodes, that I have infrequently too. The not knowing there is something in there is worse.

"The Need For A Clean House In An Emergency" concept is just one I can't shake. ~ and I do keep a clean house, but its "normal" clean, not local news camera crew on the doorstep clean ~ You know when they have someone's home on the news because of a fire, or crime, or whatever. I don't know about anyone else, but I can't help but look at how the home appears ~ either extreme. either I'm amazed that someone is living in such squalor, or, its like, how can they be that neat! So, I guess I was trying to say that even though it wasn't the camera crews I was afraid were going to arrive, there was a good chance I was going to need a neighbor to step in :cool:.... I made it through the night on my own, after all, and no harm done.

Take care, I'm going back to the couch.
 
Oh rose,
I hope I didn't hurt your feelings talking about my dustbunnies. I think it's great to have a clean house, it's just getting harder every day for me to keep up with it all.
I hope you are feeling much better, enjoy your book,
talk soon,
hugs,
brenda
 
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