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Thread: Crazy Week after Stenosis Surgery

  1. #11
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    Quote Originally Posted by gwenllian111 View Post
    Your experience about that hospital, where you had to wait for hours in ER and no one saw you - is exactly what the NHS is like in the UK!!
    And exactly what it's like in the US! I've lost count of how many times I've been in the ER since being dx'ed. For the first 2.5 years it was several times a month, sometimes several times a week. The Flagstaff hospital was smaller and the ER people knew me, so I usually got in quicker. But at my local hospital here and at JHU I've never been seen in less than 6 hours. Wish I were kidding about that.

  2. #12
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    Quote Originally Posted by Sangye View Post
    And exactly what it's like in the US! I've lost count of how many times I've been in the ER since being dx'ed. For the first 2.5 years it was several times a month, sometimes several times a week. The Flagstaff hospital was smaller and the ER people knew me, so I usually got in quicker. But at my local hospital here and at JHU I've never been seen in less than 6 hours. Wish I were kidding about that.
    I guess we are spoiled then in our area cause I have never waited an hour in an ER or urgent care clinic. When I went into a local hospital the first time with WG/GPA my daughter from NYC brought me to urgent care. They ran about four or five different tests and I was complaining that i had to wait an hour to get into my hospital bed. My daughter told me that in NYC I would still be waiting in a hall way for the first test to be completed. She could not believe how quickly they did all the x-rays, CT scans, heart monitoring, blood work, urine tests etc. before admitting me to inpatient care. To me it seemed a long time since I was very ill at the time but it was probably only three or four hours from when I showed up at urgent care to being in my hospital bed. Of course not being WGs experts they had no clue what my illness was so they started treating me me for pneumonia, bladder infection, and sprained arm, none of which I had.

  3. #13
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    Every time I've gone to JHU's ER, I've known I had to be admitted. Even so, I've never gotten out of the ER in less than 12 hours!

  4. #14
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    I almost feel embarrased to say that my experience with my hospital, Addenbrookes, is first class. As its only just over an hour away by car, it is my 'go-to' if I have a problem, although there are closer hospitals.

    If my blood work throws up a problem then they give me a call and I am straight in, likewise if I feel something is wrong within myself, I only have to give them a call and I can go straight in.

    I visited the ward the other day where I spent 2 weeks when first diagnosed. I handed them a plate full of freshly made doughnuts from our village bakery.

    How I made the car journey with that lovely smell without tearing open the bag, I'll never know!!

  5. #15
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    my story sounds so much like yours. I had a dialation and a mucus plug was in my air way. I actually was unable to move it and passed out they had to put me on a vent until they figured out what had happened but I felt as if something was stuck earlier in the day. supper scary. glad it worked out for you.

  6. #16
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    Well done, what a scarey three days. You always worry that they left something in there during the operation- I am so glad you are feeling better. Let's hope this fixes the problem for good.
    My blog: Animo

  7. #17
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    What a nightmare! I'm thankful you got sorted in the end.

    My wife suffers with tracheal stenosis and has to have dilation every 5 to 6 months. If she has medical problems in the meantime, and she's had the Wegener's so long that she knows if that's the cause, she contacts the wards at the local hospital directly. She's previously had major problems waiting four or five hours to be assessed when she probably knew more about the problem that the emergency doctors who were supposed to be treating her! So the doctors who treated her Wegener's gave them their direct numbers for the wards and if the Wegener's flares she can get admitted right away and be dealt with by people who understand the disease.

    Good luck in the future.

  8. #18
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    I am thankful I have not had any problems with tracheal or bronchial stenosis. I'm sorry for those of you who have, and always glad to hear of a story where there was improvement, a successful procedure, or a crisis was averted.
    Anne, dx'ed April 2011

  9. #19
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    Had the same thing happen to me after my second one - unable to breath and my husband was piling me in the car to take me to the ER and I coughed and it came up. Made sure that my doctor knew so they would make sure I am cleared out well after surgery next time. I know how scared you were.

  10. #20
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    I too get those stuck in my throat but I have never had dilation. I think I'm due for one. I just need to go to the best place to get it done. It seems to me what I've read the best place is the mayo clinic?

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