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Thread: Wegener's sucks... (in case someone didn't already know)

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    Default Wegener's sucks... (in case someone didn't already know)

    Seems to be the thing to do here, so I'll continue the tradition by whining out my story for anyone to read...

    April 2012 I had been slipping down a strange slope for five months, with seemingly unrelated medical problems which had no apparent connection (except in hindsight). Hands crippled by extreme pain (veins being attacked). Upper respiratory issues so severe as to be indescribable (I was passing out due to lack of oxygen). Tissue... uhm... abnormalities... in my mouth which were so severe there was discussion of pulling all my teeth before they fell out, and then amputating half of my jaw. Mild chest pain from both heart and lung areas. Swelling in legs and feet. Extreme fatigue. Also a mild case of general ugliness, but that predates Wegeners.

    So... the periodontist (absolute dedicated genius) spent an hour and a half looking into my mouth for the third or fourth time when he said: "I need to take a tissue biopsy and send it to a lab in California." He had just figured it out from memory of a patient long ago, and wanted confirmation before telling me. Biopsy result and positive C-ANCA confirmed Wegener's diagnosis. My symptoms were already extreme but rapidly escalated, three days later I was in the hospital.

    The hospital emergency room started treatment of 150mg cyclophosphamide and 80mg prednisone. Four hours later I was eating a grilled ham and cheese sandwich (making you hungry?) had fries too. It had been two months since I ate anything close to solid so this looked like instant cure (hospitals don't take much time to explain things to patients). For three days they put cameras anyplace they'd fit and used every imaging machine they owned to scan every part of my body, often more than one time. They took tissue biopsy of, uhm, all over. Worst damage was to lungs, heart and upper respiratory. Veins recovered almost instantly and I felt great on that much prednisone, at first, I'm sure anyone here knows that story.

    A month later my wife was diagnosed with breast cancer. She survived it in 1999 and now it was back in her bone marrow. A year later, summer of 2013, I'd been in the hospital 7 times and was not very hopeful. Lungs recovered, heart never will, fatigue is awful but I had managed to work just enough to keep my job and health insurance, all while taking care of my very sick wife. By then I had survived more life threatening issues than I can remember, including massive blood clots everywhere but my toenails. Deep vein thrombosis, blood clots breaking loose and passing through my heart only to get lodged in lungs and back of my brain. Good news is at that time I was hardly using the wheelchair because fatigue had become less an issue, and the multiple DVT(s) in my legs were finally less painful.

    Sue died in June of 2013. August 2013 I developed bladder issues. I had a live in volunteer nurse who kept taking me to the ER. Spent most of that month in the hospital learning that what they call a catheter is actually the size of a garden hose. Lost my job because I had no legal job protections remaining, no prognosis, and no guess at when or if I'd ever be able to return to work... Spent six months recuperating from the bladder problem, never got a real diagnosis as to what the problem was, no doctor would stick his neck out to guess on that one.

    I was rehired February 2014 as soon as I got a release to work. Keep in mind that this entire time I have been battling one infection after another. By March of 2015 the infections had drained me and prednisone destroyed whatever wasn't drained (down to 5mg, traded cyclo for azathioprine). At one point I went blind five times in one week, need glasses now but eyesight is nearly stable. There have been so many issues that eyesight seems trivial. Did I start by warning that I would whine out my story?

    March 2015, sinus infection didn't respond to antibiotics which had worked numerous times before. Took Cefprozil and Methylprednisolone to kill it. Nearly killed me as well, I can't get back to anything like normal. I was unable to return to work and now rely on VA for health care (kinda not so good) and I'm trying to navigate the insanity of applying for Social Security Disability. If that doesn't get approved I'm really in trouble.

    One last note... I got me a totally bitchin wheelchair now... so I can actually get groceries during less fatigued periods.

    Done whining,
    Gary

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    Hi Gary, and welcome.

    That's a good sort of whine story with a little bit of humour in between. How you have kept up your spirits after all of that, I don't know.
    What a lot of trouble you have been in. Certainly keeping those medical staff on their toes, I bet.

    I'm so sorry that you lost your wife to that other condition, that sucks just as bad.

    I hope you get you disability pension approved, I can't see why you shouldn't with all of those issues. I will keep my fingers crossed for you, however it gets really hard to type.

    A bitchin wheelchair hey, that sounds pretty awesome.

    Stick around here and I hope your whining becomes less as the months go on
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Gary I don't know how you kept going through all that. You're a trooper. You have so much strength.

    There are a bunch of people on this forum that have gone through the Social Security Disability roundabout so hopefully they will chime in and perhaps make offer some advice/suggestions.

    You should post a pic of your bitchin' wheelchair - and it should have a bitchin' name too!
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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    Thanks for sharing your story Gary. I hope you find some better sailing on the Social Security Sea. I don't know anything about it but I have a feeling that you will become our new expert.
    With proper treatment you might be surprised how much you can recover. I have had this illness for about 35 years and been fighting relapse for about 15 years. I didn't think getting better was possible.
    I told people I was a recovering optimist. (I wanted to feel I was recovering so bad I had to invent THAT)

    Well, life isn't perfect but I have recovered a lot of my health after all this time. I am able to work more than I have been able to for a long time and I haven't been hospitalized for months (knock on wood). I'm hoping to read about your miraculous recovery here.

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    Quote Originally Posted by andrew View Post
    You should post a pic of your bitchin' wheelchair - and it should have a bitchin' name too!
    Too girly to give it a name.
    Attached Images Attached Images

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    Quote Originally Posted by me2 View Post
    I have had this illness for about 35 years and been fighting relapse for about 15 years.
    Ahhhh, now that's what I wanna hear. Long term survival is possible, even if it sucks at times. Before finding this group I only knew what I could find in medical books and online resources, mostly medical, mostly crackpot junk all clearly quoting the same source. I read hundreds of case studies and several group studies with all of it looking very grim. Nobody surviving. The day I was diagnosed, the very first google result claimed WG was 100% fatal in 2 to 3 months... I believed it given my condition after four or five months.

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    Quote Originally Posted by mishb View Post
    Certainly keeping those medical staff on their toes, I bet.
    Hospital tip #1: At 2 am the vampires come into your room to suck blood. First thing they do is tell you your name: "John Smith?"... The correct answer is: "Naw, Sven Jorgen"... with your best swedish accent. Vampire exits room, returns 30 seconds later with nurse who tells you to knock it off...

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    Well, Birdie, it can even MORE than not suck. I had drug free remission for 20 years. Then the relapse. You will find much better information talking to the folks here then wandering around in the
    internet minefield. Of course, there are some nuggets out in the mine field- that's why we risk it.

    There are many very encouraging stories to be found here. Keep in mind though that many of the success stories don't hang around much- they go back to living a free range life.
    Don't get discouraged because many people are talking about serious problems.
    I know the better that I am doing the less time I have to spend here and I don't have crazy symptoms I need help with.
    Get ya some sun glasses Gary- the future is bright!!!

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    Welcome to the forum, Gary. I love your writing and your fighting spirit. I am sorry for your loss.
    I guess the blader issues were because of the ctx.
    you chair looks cool. Please update us how are you doing.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Welcome, Gary! I wish our "Like" button had not disappeared. Thanks for telling your story and I'm sorry you have had a much worse time of it than some of us. My heart goes out to you on the loss of your wife, on top of all of it. I want to tell you, I have met Kirk (me2), the one who has had WG for 35 years, went into drug-free remission for 20, and then flared again, and well, he looks amazingly great and appears to get around and do things in the world just like anyone else, despite his continuing struggle against a relapse. I hope that is you someday! As for SS Disability, yes, it is convoluted and can drive you crazy, but I did it and am getting benefits, and have a lot less problems than you do. So keep at it. Do keep in mind that the older you are, the more chance of success. I was 58 when I got it and am almost 63 now. I don't expect to be reviewed, since I'm at the age where I could get SS benefits anyway. If you are a lot younger, still keep at it, and send them a picture of your wheelchair, with you in it. I don't see how they could deny you, but hire a lawyer if you have to... that seems to have a higher success rate. Most lawyers for this will only collect from you if they are successful, I've heard. I did not have to hire one.
    Anne, dx'ed April 2011

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