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Thread: Hello from Texas :)

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    Default Hello from Texas :)

    Hello,

    My name is Kristina and I was just diagnosed with Wegener's in Dec. Nasty little bug did some pretty good damage already. It started as a sinus infection and bloomed into, well, you know. My nose collapsed and is toast, have lost 3/4 of my hearing and have lung, liver, and kidney damage. Due to the lovely health care system in the states and insurance I will just now be seeing my main doctor.. 2 months after getting out of the hospital which I was in for 3 weeks. I have so many questions and not even sure were to begin. I'm a single mother of 3 kids ages 14, 12 ,8 so being knocked down has been rough on us all. But I come from a long line of tough women and fight I will. I've under went 4 rounds of chemo so far and am taking 60mg of steroids per day. I was in bad shape when I came out of the hospital but started doing much better. Wasn't in all the pain which was a relief. But and starting to have all the symtoms again. So hopefully my doctor can give me some answers tomorrow... Wish me luck...

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    Welcome to the forum, Kristina. If you have questions, ask away. There's probably someone on here who can answer or direct you to someone else who can. If you just need to blow off steam, go ahead. We all get frustrated, fearful, angry at this dumb disease.

    I hope your doc can figure out what's going on and treat it.

    Good luck and better health!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Welcome to the family Kristina. Where in Texas are you?

    When you say chemo, do you mean Cyclophosphamide(ctx) by IV?

    Try and get copies of your blood work and we can help you learn what the numbers mean for all the tests.

    How long have you been at 60mg of pred?

    Are you able to work right now?
    Phil Berggren, dx 2003

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    Thanks Pete,
    It's nice having someone to talk to that is in the same boat so to speak. This all happened so quickly and frankly scares the heck out of me. Here's a little background on how mine began. It started with a sinus infection end of June 2013, went to dr.s put on steroids and antibiotics many times to no avail. By Oct. my nose was nothing but puss and polyps, I could barely hear I couldn't even lay my head on a pillow it hurt to even touch my head. lol, had one dr accuse me of being a cococaine user... (shakes head) when did dr's stop caring? I had been to the emergency room several times finally had to move closer to family and through another ER visit found the right doctor. Was admitted end of Nov. and through lots of test, biopsy of nose and lung was officially diagnose with WG. My nose completely collapsed and is just a giant cavern.. most of my sinus area destroyed... my vision was affected as well but not to badley... I did loose 3/4 of my hearing and will have have to tubes in my ears for the rest of my life according to my ENT.. I have an area the size of a grapefruit on my lungs that is already damaged as well as damage to my kidneys and liver. All in 6 months.... I'm still trying to wrap my head around it. The only doctor I have got to see since getting out of the hospital it my ENT. I do finally get to see my Rhemiutod doctor tomorrow... sighs... thankfully. I had 4 rounds of RX and am on 60mg of pred. a day. But am experiencing symtoms again. My doctor did order a CT, chest x-ray, and blood work.. I will find out about those tomorrow. Sighs.... you know the sad thing is, I have so many questions I don't even know were to begin. Or better yet what questions should I be asking... I don't know what any of the test counts people talk about on here that lets you know if your having a flare up... or how they decide your in remission. Just feeling a bit over whelmed. Any advice you could give (smiles) would be appreciated....

    Kristina Lost but Fighting....

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    HI Phil,

    I'm currently living on the coast by Victoria... love being by the water. My doctor started me on RX, 4 rounds with 60mg pred. per day. I'm working on my records now... 3 weeks in the hospital, there's like 709 pgs... I didn't realize how expensive it is to get records.... I've been on the pred. since the end of Nov. 2013.. Symtoms first started end of June was officially diagnosed first part of Dec.2013 but am already having the major symtoms and pain come back after just a couple of weeks of my last RX treatment... that's scary.. I see my Rhemetoid doctor tomorrow for the first time since I was let out of hospital... that was 2 months ago. Insurance problems... so I set here still not really knowing anything about WG and what is in store for me... Any advice or helpful knowledge is welcome...


    Kristina Lost but Fighting

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    Here are some good threads for newbies.


    http://www.wegeners-granulomatosis.c...ing-flare.html

    http://www.wegeners-granulomatosis.c...resources.html

    http://www.wegeners-granulomatosis.c...w-treated.html

    http://www.wegeners-granulomatosis.c...g-doctors.html

    I hope these help you some. This is no doubt going to be the biggest learning curve of your life. We are here to help you.
    Phil Berggren, dx 2003

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    Hi Kristina and welcome.
    I'm so sorry that you had to find out about WG/GPA the way you have - but I'm glad that you found us, the best forum to come to.

    If you have any questions, someone is on here 24 hours a day, basically. You see, we live all over this big big Planet.
    If you check out the weggie map at the top of the screen, you will see where everyone is.

    Good luck with the rheumatologist and I hope you start feeling better, very quickly.
    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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    Hi Kristina and welcome to the forum. There is a wealth of information on the site in the archives. The people here are wonderful, warm, knowledgeable, caring and loving. You will find much support here. Feel free to vent, ask questions, or just share. We are all here for each other.

    Good luck with your Rheumy appt today. Do you have help with the kids? That will relieve a lot of your stress. A support system is very helpful right now. Well good luck and keep us posted with your success.
    Cindy



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


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    I don't know what time your appointment is but I think it is really important to take a friend or parent with you if available, as I have said before four ears hear a lot better than two. See if your Rheumy is open to being in touch with the vasculitis center if he has any questions. Good luck.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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    Hi Kristina

    Welcome to the Forum. Everyone here is so helpful and caring. I hope you had an informative appointment with your Rheumatologist and got a few questions answered. How are your kids doing with your diagnosis?

    Sending hugs your way

    Jennie

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