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Thread: Reality Check

  1. #41
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    Sangye, I know i have moaned about the nhs here but it just makes you realise how fortunate we are. It is bad enough to get a diagnoses of wegs, let alone have to worry if you have the right cover. The things that have happened to people while undergoing procedures is truly horendous.

  2. #42
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    Quote Originally Posted by Sangye View Post
    Since this thread is a Sticky, I want to return to the original topic. We've now lost another member of our group (CindyR's mom) to Wegs and/or its complications. She was being treated in the ICU by non-Wegs docs. CindyR contacted the Wegs doc's office for his input, only to be told the hospital docs had to request it.

    When I was hospitalized at a local hospital with severe vertigo and hearing loss in July, the docs ignored my demands to call my Wegs docs. I finally called my Wegs ENT myself, who was horrified that they weren't treating the sudden hearing loss. He told me what treatment was required. I called the hospital doc in and demanded she call him immediately, that we were going to begin his treatment plan immediately. She was wishy-washy. I actually shouted at her.

    I was in for several days and every single day this doctor was wishy-washy about my care. Every single day I had to demand that she call my Wegs doc to check in, and I called him myself to make sure she did. They messed up the treatment one day (gave me half as much pred as I needed) and when I found out the next day my Wegs doc was livid. I raised holy hell in that hospital for 6 straight days to make sure I got proper care. The result is that I preserved my hearing. I'd be completely deaf in one ear if I hadn't.

    I write this because we have to take matters into our own hands with Wegs. If you want a Wegs doc to consult, you must demand it. Don't worry more about their feelings than about your health. Make sure your friends and family know to be demanding if you're unable to do it yourself.
    Good advice and scary when you think about the potential consequences. When I was in a nursing home for rehab work I had to have a local doctor to over see my care. One time when I developed some new symptoms the nurses wanted me to go to local emergency room for evaluation. He vetoed it and later came to see me and told me there was nothing wrong with me even though the nurses and my family could see some of the symptoms like my sudden hearing loss and trouble swallowing. Fortunately my rheumatologist who treated me at a hosptial a few hours away was aware of my symptoms and told the nursing home staff to transfer me down to his hospital ASAP since I appeared to be having symptoms suggesting a flare up of Wegener's. Until then the local doctor had done fairly well in treating me even though he knew nothing about Wegener's. None of the other doctors I saw in emergency rooms did either but they were open to admitting their ignorance and getting advice from those who had more experience in this area.

    I wonder how many people die from incorrect care due to lack of expertise in treatment or incorrect diagnosis. I think most of us with significant damage from the Wegener's might have been spared the hearing loss, lung damage, kidney damage etc if we had been correctly diagnosed and treated earlier. One of my doctors (a podiatrist I saw for my pain in feet and legs before my diagnosis) apologized the other day for not recognizing the cause of my symptoms and refering me to a rheumatologist instead of a pain specialist who evaluated me for spinal stenosis and neuropathy.

    If I had known my diagnosis during initial hospital admission and been as wise as Sangye I might have been able to save my hearing too and balance on right side. I had to have BAHA surgery two years later to restore it partially. Poor treatment from incorrect diagnosis and lack of expertise can be a killer.
    Last edited by drz; 07-15-2012 at 09:16 AM.

  3. #43
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    Quote Originally Posted by drz View Post
    I wonder how many people die from incorrect care due to lack of expertise in treatment or incorrect diagnosis. .
    So far, the deaths of every person we've lost in our group can be attributed to inadequate care and/or lack of expertise. Even the gentleman who inspired this thread--while not a member of our group-- died because of it. My guess is that the numbers are quite high. The numbers of Weggies incurring damage unnecessarily are probably staggering.

  4. #44
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    How awful for you to remember that experience. I think the good one's (docs) put themselves in your shoes, and live each moment with you. I am grateful you have been so careful with your providers Sangye. May your experience teach many others, so thank you for sharing.

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    I'm glad to do it, Palmyra. If suffering can't be used to benefit others, it's wasted.

  6. #46
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    A friend's partner is in his 40s and has just been diagnosed with a condition called PSP that I have never heard of before. I just Googled it and it makes Wegener's sound like the easy option! Progressive Supranuclear Palsy
    There is some bad stuff out there.
    Last edited by Jack; 11-23-2010 at 08:40 AM.
    Jack

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    How horrible... No matter how bad off we are, we don't have to look very far to find others worse off.

  8. #48
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    If I can go back to the bronchoscopy for a moment, I was told before the procedure (twice) that I would be in and out of conciousness because they needed me to react to some of their orders. I must admit I found it pretty ugly but knowing before hand eased the anxiety. I am going to Google PSP now.
    Dale

  9. #49
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    Default I can speak on this form personal experience

    I was hospitalized in October 2010 with "pneumonia" after going though all the classic sinus misteps, surgery and a week in the HP a month earlier to treat a "sinus infection" that would not go away. The only thing that saved me was a doctor who had worked in larger hospitals than my local smalltown HP saw the splinter hemmorages in my fingers and the purple toes from the vasculitis and contacted doctors and a larger HP in Memphis to inform them she though I had Wegs. If I had listened to local doctors I, as I was told in Memphis, would have lost my feet and been on dialysis. This is what makes Wegs so scary.

  10. #50
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    Default West Nile Virus

    My first time in they misdiagnosed me with West Nile Virus and sent me home. When my wife called to bring me back in to the ER, the Dr told her not to bring me back in that there was nothing they could do and I should just stay home and ride out the symptoms. She didn't listen and took me back in. Luckily the right Doctors were in place the second time around. My Pulmonary Dr diagnosed me while I was still in the ER after looking at the tests that were run the first time I was in and consulting with my rheumatologist who ran them.

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