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Thread: Reality Check

  1. #21
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    i am so glad i was born in the uk where all these problems don't exist.i know it's not perfect but a health care system that is profit and not patient driven is just not right.
    john.

  2. #22
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    Egads, Sangye, that waterboarding had to totally suck, But man you gave me a much needed laugh. ^^
    I had a colonoscopy 2 years ago and had polyps removed and I woke up during it. Man, with a spastic gutt, all that air they pumped in me was pure torure. The nurse was pushing on my gutss and I gave her a good smack. Then they pushed more meds but I still didn't go out. I was screaming for them to stop. It took a good 10 minutes for them to get done. Well, they figured I wouldn't remember it. WRONG! I told them the whole story and that GI was stunned. He said that from then on to make sure to tell any dr about it and that I needed general for procedures as twilight doesn't work on me anymore. He said he'd never seen gutt spasms like that in his life. Well, in a way I'm glad it happened as they then believed the amount of pain I have in my gutts. On Bentyl for that now. It helps but makes me so tired.
    Wow, I'm running on. But it's nice to vent about this stuff.
    I've had several procedures gone wrong, but I'll save those for later... one is kinda funny...involves a gyno and a speculum hehehe.

  3. #23
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    Quote Originally Posted by Sangye View Post

    They said I "looked too good to be flaring," .
    .
    I get this A LOT, even when I feel really unwell. It's quite a hidden disease in that sense.

    What a sad story. I hope his wife takes legal action over the awful care her late husband received.

    My WG was undiagnosed / left untreated for nearly 8 years, by my Thoracic consultant. I kept telling him that I couldn't breathe properly, and didn't feel well, but for 8 years, he ignored me completely until I nearly died, and other doctors took over to save my life. It left me with a permenantly scarred trachea, countless surgeries, and loss of vision in my left eye which wouldn't have happened had I been immuno suppressed. Very frustrating.

    I'm glad I took legal action against him, (the hospital), if nothing else, to raise awareness about WG.

  4. #24
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    I'm glad you did, too Gwen. Eight years of ignoring symptoms like you had is totally inexcusable.

  5. #25
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    Sangye - your current position is one that I am worried about being placed in... In fact - I closed one of my IRA's to support my current time off/COBRA insurance costs...i argued with myself that retirement money would do me no good if I was not there to "enjoy" it... The idea of not having WEGS treatment coverage - whew...
    I also was awake for my initial Bronch....I remember trying to figure out how to move my fingers to communicate and tell them I was awake. All they did was hold my hands harder... I told them after I was awake and same result from the Pulmonologist... Medical people have to remember everyone is different - all drugs do not work for all people!!

  6. #26
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    I'm grateful that I was choking so much that I knew they were aware I was too awake. I didn't have any fear like "They don't know I can feel this" which has got to be the worst nightmare. I guess enough of the drug was working to keep me from panicking too much.

  7. #27
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    Default water boarding...ugh

    Ok I will have to tell my bronch story...after a mis diagnosis of vocal fold disfunction....i finally was able to have a bronch done by a very reluctant pulmo...the one I wanted was out of town...she is great but was not available...she suspected WG from the start.....any way...I was awake for all of it and you could've heard a pin drop when she saw the stenosis and pushed thru it any way to look farther down...she could only do a wash to sample my bronch and I started having difficulty so she could not go further...turns out she totally occluded me when she shoved it thru....she allowed my mother (also a nurse ) to remain in the room during the proceedure.....the doc honestly did not think she would find anything unusually....needless to say my mom took 45 minutes to recover before she could come back to see me....I was terrified and can only image what my mom went thru..I WILL NEVER SEE THE PULM DOC AGAIN....so yes I am going to fight to see the best doc to treat me....I am concerned otherwise things will be missed....my right jaw bone still hurts but is not a swollen as before the methrotrexate and pred......Thanks for letting me vent

  8. #28
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    Wow, that's horrible! I can't believe a doc would proceed, knowing it would completely block your airway. Once she saw that she should have backed out and said there's no way to do a bronch until the stenosis is addressed. Didn't she take CPR 101-- "Maintain Airway first"

  9. #29
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    That was scarey! So glad you are going to the best, I agree with you...we all need to see the best when dealing with our ( WG) issues!

  10. #30
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    Elephant, how are you feeling? Are you having fun on your vacation? Vacation and remission-- two things you very much deserve.

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