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Thread: Reality Check

  1. #1
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    Default Reality Check

    I spent all day yesterday organizing piles of paperwork that had accumulated over the past couple months. I was too sick to deal with it until now. Most of it involved medical care, the majority being insurance papers and medical bills. It was so time-consuming that by the end of the day I was grumbling to myself (even more) about the state of health care in the US.

    I hear stories from some of you in other countries with nationalized health care-- no bills, no insurance denials and appeals, no entire day spent just on filing the paperwork....

    But close to the end I came across a VF newsletter from a few months ago. I read about a man with Wegs who said that even though he was in awful pain, his blood work always looked great and his doctors thought he must be nuts. He asked if anyone had experienced the same thing. Since that pretty much described me, I emailed him and encouraged him to find a Wegs specialist, that they would know what to do. I also gave him the link to our group.

    Today I got an email from his wife. She said he died 3 weeks ago from complications of repeated "pneumonia" and diabetic ketoacidosis. He was too weak to take his insulin, and he was coughing up blood. She said he'd had a continual flare for 6 years. So clearly, he died from Wegs.

    I was so saddened by this. He and I had such similar cases. I've never been in remission. I've been misdiagnosed the same way several times by non-Wegs doctors--treated for pneumonia for weeks at a time while I slowly went downhill. He died the week I received my last Rituxan infusion. Maybe if he'd had a Wegs specialist, he might still be alive.

    It's a reminder of how vital it is to get the very best and most specialized care we can.

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    Doug Guest

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    Gives pause, doesn't it? What a tragedy.

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    Damn. That's so sad. Wouldn't the doc think that something must have been wrong? The guy must have been obviously sick. I guess we'll never know. Despite the tragic circumstances Sangye, thanks for posting. It is indeed a highlight to all of us, newly diagnosed or 'experienced', to get and keep specialised care.
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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    I was that sick in June when I was hospitalized for the 2nd round of pneumonia in 2 months (or a continuing infection). The non-Wegs rheumys and pulmys said it wasn't a Wegs flare, even though I was coughing up blood and weak as can be.

    They said I "looked too good to be flaring," that my blood work was fine (ie no inflammation), and that even though the bronchoscopy showed alveolar hemorrhage, there wasn't enough blood to call it Wegs. They decided I didn't even have pneumonia, and sent me home with a dx of "minor viral infection." One of them actually belittled me (seriously) for taking up a bed in the Pulmonary ICU for something so minor.

    When my Wegs doc found out the next morning, he was livid. It was obviously a flare. So it could have happened to me, too.

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    I hate to hear that story. I too have relatively good numbers in most of my blood work, but my rhuemy is concerned about one particular number and that is why she is sending me to a WEGS specialist. I am thankful for that, especially after hearing this story.
    coffeelover

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    That just makes me sick to my stomach to hear that. Can't believe the pulmonary doctors not thinking it's WG, considering your history?!?!
    That is so awful about that man losing his life because of WG. That is a darn shame.

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    They were great doctors (except for the guy who belittled me-- he was a lousy doc all round), they just didn't know Wegs all its disguises. They don't understand that Weggies can look fine and be gravely ill. (Not that I looked at all fine. But because I maintain my sense of humor, it gives the impression that I'm in better shape than I am. Gravely ill people don't usually laugh)

    Even my Wegs doc said that unless a doc sees Wegs every day, they would have missed my flare.

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    Sangye, you have a great sense of humor. You keep me laughing!

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    When I was in the hospital for all that, the pulmy was very serious. During the bronchoscopy, I woke up while they were filling my lungs with saline and vacuuming it out to get a sample ("lavage'). I was choking and choking. It was terrifying, like being drowned. Finally they knocked me out all the way.

    When the doc came by later, I told him I was awake during that part and I remembered the whole thing. He said they knew I needed more anesthesia, but no way did I remember it (they give you some kind of amnesia drug). I said "You did the lavage 4 times, right?" He turned a little pale. I said, "It's okay, I'm still here. But thanks for the water-boarding. Do you moonlight as the attending physician at Guantanomo?" I thought that was pretty funny, but he barely cracked a smile.

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    I've learned that they don't have much sense of humour when they are caught making a **** up. Perhaps they are afraid of litigation?

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