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  1. #1
    Missouri Star

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    Exclamation Holy cannoli they FOUND something! Woohoo!!! Oh, wait.... Aww crap!!

    Quick! Someone get me a calendar! I have to write this down!! After being poked and prodded and passed around since August, we finally have a clue regarding my breathing issues. So for those who don't remember (I haven't updated in a while) or who weren't around for the last update, here's the jist of what's happened so far:

    In August of last year I spent a night in Emerg because I could barely breathe. Our AC unit gave out and the warm air felt like it was too "thick" to breathe in, so after spending the night in the hospital they told me it was some sort of reactive airway disease. So we tried a yaffle of puffers and waited to see a respirologist. Late September I see the respirologist, he schedules a pulmonary function test and tells me it's likely asthma. Okay, fabulous. So everything is put on hold until the pulmonary function test in February, just take more puffers ad nauseam, hurry up and wait. So after the pulmonary function test, "Hmm, it's not asthma..." Great. So what in the heck is it? Well, it's some sort of obstruction. No hints, no clues, just "obstruction". So off to the ENT doc.

    Well today at my ENT appointment I got my answer, or at least part of it. Turns out I have "Idiopathic Subglottic Stenosis". It's apparently rare, usually occurs in young women, and there's no proven cure. Awesome, right?

    The "Idiopathic" part just means that we don't know WHY I have it just yet, but we do have a clue. Back in July of 2011 before I had my successful wisdom teeth surgery, I had an unsuccessful intubation. The anaesthesiologist tried to put the tube in my nose, I bled like a cut pig and the blood coated my vocal chords and my O2 sats dropped to about 50. In their panic to get the blood out so it didn't all go down in my lungs, they may have scratched my throat, and then the subsequent coughing like a 2 pack a day smoker made this MUCH worse.

    So right now we do know that just below my vocal chords my airway is quite narrow. It's not a long segment that reaches down into my lungs by any means, more like putting an elastic band around one of those long balloons they use to make animals with. Just a small area where my airway has narrowed and makes inhaling difficult and also removing the normal mucus/phlegm that accumulates down there. Yum.

    So, at least I have an answer. Somewhat. In the next 3 to 4 weeks I will require a CT scan, lots of bloodwork to rule out any rheumatic/systemic disease as a potential cause, and then surgery where they will have a good look with their big scope (he used the little one today through my nose that hurt like a mofo), biopsy it to make sure it's not something really nasty, and then use a balloon to dilate it so I can (hopefully) breathe again and then inject some steroids in it. Awesome. So for now I just keep taking my puffers and, as I have been doing, hurry up and wait. And then in 6 months or so I might be "lucky" enough to get to go and have the dilation performed again, and again in another 6 months, and again, and again, and again.... *sigh*

    I always aim to learn something new every day. Today I learned I have a disease with a name as long as my arm (and almost as long as this post!!) What did YOU learn today? lol
    *Dee*
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  2. #2
    Missouri Star

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    Default Re: Holy cannoli they FOUND something! Woohoo!!! Oh, wait.... Aww crap!!

    I learned after less than a month living in Staten Island, New York that my daughter, SIL and infant granddaughter that came back last night to pick up their soon to be 5 yr old daughter are not going back. They hated it! They are home to stay! I am so excited to have my family back for good! I might even pat my SIL on the back because it was him who made the decision because he sees how miserable my daughter and older granddaughter were. He was unhappy as well.

    I am sorry you have such disease but finally having a clue what is wrong with you must be a relief. Thinking of you always!
    Lisa

    Please treat others as you would hope others would treat those you love.


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  4. #3
    Missouri Star

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    Default Re: Holy cannoli they FOUND something! Woohoo!!! Oh, wait.... Aww crap!!

    Ask them if they can shove a piece of garden hose in there and leave it instead of having to go back in with the balloon every six months.

    I hope they can come up with something other than the balloon treatment every six months for the rest of your life, because I'm sure that is going to get old real fast.
    K is for Karen .....................Cremation - My last hope for a smokin' hot body.

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  5. #4
    Missouri Star

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    Default Re: Holy cannoli they FOUND something! Woohoo!!! Oh, wait.... Aww crap!!

    Quote Originally Posted by Lisapc View Post
    I learned after less than a month living in Staten Island, New York that my daughter, SIL and infant granddaughter that came back last night to pick up their soon to be 5 yr old daughter are not going back. They hated it! They are home to stay! I am so excited to have my family back for good! I might even pat my SIL on the back because it was him who made the decision because he sees how miserable my daughter and older granddaughter were. He was unhappy as well.

    I am sorry you have such disease but finally having a clue what is wrong with you must be a relief. Thinking of you always!
    How awesome is that?? See, there is always something to smile about!!
    *Dee*
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  7. #5
    Missouri Star

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    Default Re: Holy cannoli they FOUND something! Woohoo!!! Oh, wait.... Aww crap!!

    Quote Originally Posted by K. McEuen View Post
    Ask them if they can shove a piece of garden hose in there and leave it instead of having to go back in with the balloon every six months.

    I hope they can come up with something other than the balloon treatment every six months for the rest of your life, because I'm sure that is going to get old real fast.
    I wish! Apparently there's a tracheal resection surgery, but he didn't mention that to me today. He was probably already worried he would scare me off with the balloon idea, he was only a young fellow I'd say less than 10 years older than me lol But the garden hose idea sounds like a good one, maybe one of those fancy no-kink buggers, that should do a good job!
    *Dee*
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  8. #6
    Missouri Star

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    Default Re: Holy cannoli they FOUND something! Woohoo!!! Oh, wait.... Aww crap!!

    I'm sorry you've had all this trouble! You know it has to be true because nobody could make this stuff up!
    Cyndi


    “Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace. God is awake.” - Victor Hugo

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  10. #7
    Missouri Star

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    Default Re: Holy cannoli they FOUND something! Woohoo!!! Oh, wait.... Aww crap!!

    Quote Originally Posted by cyndiofthevortex View Post
    I'm sorry you've had all this trouble! You know it has to be true because nobody could make this stuff up!
    If I could make up something like this then I have some wicked imagination that would be better used to write some sort of non-fiction novel series lol I wonder how they come up with the names for these conditions though. Were they eating a bowl of alphabet soup and spilled it all over the table and thought "That looks good, I'll call it that!"? Because I'm pretty darn sure it's not English... lol
    *Dee*
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  11. #8
    Missouri Star

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    Default Re: Holy cannoli they FOUND something! Woohoo!!! Oh, wait.... Aww crap!!

    glad you have some answers at least. Scarey not to be able to breath though!

  12. #9
    Missouri Star

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    Default Re: Holy cannoli they FOUND something! Woohoo!!! Oh, wait.... Aww crap!!

    Quote Originally Posted by Divine Daisy View Post
    glad you have some answers at least. Scarey not to be able to breath though!
    Is it ever! I read something a few minutes ago, and it seems pretty accurate. This condition is like trying to breathe through a McDonald's straw with a clothespin on your nose. You can stay in one spot and you're okay because your breathing is nice and steady, but try breathing through that straw and walking up a set of stairs and see how far you get before you panic and yank that clothespin off and spit the straw out. Wish I could just yank the clothespin off and catch my breath sometimes lol The puffers keep it somewhat under control, but I still can't do much and stairs (almost literally) kill me!
    *Dee*
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  13. #10
    Missouri Star

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    Default Re: Holy cannoli they FOUND something! Woohoo!!! Oh, wait.... Aww crap!!

    Oh Dee, I am so glad they came up with a name for it and some treatments that will make it better. It really sucks that they may have to do the treatment every 6 months or so. Would be nice if the garden hose would work. A diagnosis and a plan of action are always better than the unknown. Hope the treatments are pain free and do a wonderful job! Lisa
    Lisa

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