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Thread: My name is Shawn

  1. #1
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    Default My name is Shawn

    I just received my diagnosis on 5/2/2014. Backstory if your interested started back in February. I was sick as a dog, I was having feverish night sweats, scalp infections, chest congestion, weakness, and blurred vision in one eye etc etc.... Went to the doc. Who put me on antibiotics, with no results. Next doc. Put me on an antifungal. Next doc put me back on antibiotics. None knew what they were dealing with. Finally half dead my wife drug my sorry behind to the ER. They diagnosed me with flu a and b , with double pneumonia after a week sent me home. Two weeks later still not recovering went back to er. My kidneys were failing they started me on pred. And I startered recovering they were not so quick to release me the secound time but instead transfered me to OU Med..in OKC. They after days of pokes and prods finally. Concluded my WG diagnosis. They have me on cytoxin pills and 80mg pred. I was supposed to have a kidney biopsy Thursday but due to infection it was changed till Tuesday and or whenever the infection clears up...yeah more meds..that's my story I will stop rambling now..
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    Welcome to the forum Shawn. Sorry you had to find us, but glad you did. This is the best place to be if you have wegs. You've been through a lot in a short period of time. I glad they found it when they did.

    If you've been lurking for awhile you know there is a wealth of information on the site. The archives are great for research. There are a lot of loving, caring people here that support each of without judgement. So if at any time you feel the need to rant, chat, ask a question please do. We help each of out when and where we can.

    Again welcome to the forum, glad you'e here.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


  3. #3
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    Welcome Shawn, this is the place to be to gain an understanding of what you are and will be going thru in the next months. There are many experiences, facts, and opinions on here...you will have to sort thru the trash and good stuff to gain your own understanding and approach and deal with your 'new normal'. Your story is very familiar to me as I wandered into WG in the same manner...docs not knowing/guessing, wrong drugs for wrong dxes, and finally a collapse which brought on some very good care...sorry you had to get to that point...but you can and will get better. Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Welcome, Shawn, and thanks for sharing your story. Don't worry about rambling... that was short compared to many. Everyone's story is a little different, but many of us went through a time period of not getting a diagnosis and being treated for everything else under the sun. I also was put on CTX and pred and my lung involvement cleared up within 2 or 3 months... luckily I haven't had kidney involvement but did get hit in the sinuses and ears, as many have, which tends to drag on because of the damage done there. Just hang in there and you will get better and more able to return to your life as usual. I hope you will continue to participate in forum discussions.
    Anne, dx'ed April 2011

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    I plan on it everyone seems caring and sincere. The info is helpful too.

    Sent from my SAMSUNG-SGH-I727 using Tapatalk 2

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    Hi Shawn and welcome to you from me in Australia.
    As you can see, we are from all over this great world.
    WG is not picky, it doesn't care if you are American or Australian or even Sth African, but we can all come to this one place, any time of the day and find some excellent advice - I'm just really sorry that WG also found you

    I'm glad your wife dragged you to the hospital and I'm glad that they finally came to the correct diagnosis.

    We look forward to helping you get through this and also helping you with anything that you may not be sure about in the next few weeks.

    Take it easy Shawn and ............
    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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    80mg pred! I guess it would be a silly question to ask if there's anything left to eat in the house or if you have found the late night channel with I Love Lucy reruns.... :-)

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    True the thirty poundsi lost in the hospital is back plus a few..

    Sent from my SAMSUNG-SGH-I727 using Tapatalk 2

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    I saw you were on pred but didn't notice it was 80mg., and it's been a month! I wonder if they'll start tapering that soon. Aside from the eating factor, some people tolerate it better than others, in terms of nervousness, sleeplessness, and something we call pred rage. On the other hand, in the beginning stages, I was so fatigued from the illness and probably the CTX, I don't think the 60mg. pred bothered me much at all, and I slept just fine. In fact, all I did was sleep, get up for awhile to cook something and eat it in front of the computer, and then go back to sleep.
    Anne, dx'ed April 2011

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    They are tapering it off 80 is what they started me on at 40 mg today..yeah 80 is what they sent me home on but I was so ill it didn't do anything but make me eat...I sleep just fine

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