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Thread: How has Wegeners effected you?

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    Default How has Wegeners effected you?

    I am not sure if this is a duplicate thread idea or not, but my idea was to have a thread that tracks what organs or WG affected areas most people have experienced since diagnosis. I see alot of people mention they have limited or localized WG's and I started off with being told I had limited or localized WG's that affected the trachea area (sub-glottal stenosis).

    However, since that time back in January 2013, I've had a flare that was detected by elevated CRP; Sed Rate numbers with blood in urine where my eyes (scleritis) and mass or lesion on top of the kidneys showing inflammation (they said cyst). Doctors told me the lesion/mass presentation is very rare for WG's ( they did a needle biospy and found not cancerous, not infected, just inflammation) but that I have no protein in my urine and they don't consider it to be glomerulonephritis.

    So with that being said, would anyone else like to share areas/organs that have been affected with inflammation since being diagnosed with WG's on this thread. I think it would be helpful to some people looking to find out areas (either common or uncommon) where inflammation has occurred in people dealing with our disease.

    Thanks Sheila
    Sheila-dx and delivered baby Joshua January 2013 (Welcomed Baby Joshua)
    Follow my blog: http://charitymartinsfitnessjourney.tumblr.com ( a blog/daily journal about diet, exercise and health while being a wife, mom and WG patient)

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    Started with right ear problem. Progressed to include sinuses and lungs leading to dx. Now showing some signs of kidney involvement.

    The mental/spiritual(?) outlook has changed. While I was in the hospital, I had a sense that I was in the right place with the right people caring for me. I never doubted that I would survive and even thrive with this disease. I haven't had the internal "why me" conversation, and I don't intend to. I've adjusted to WG/GPA and its new normal. Retirement has helped because I can experience life pretty much on my own terms (exception for family stuff). I lead a pretty high quality of life, and I'm thankful for an understanding and patient wife, great doctors, modern pharmaceuticals, and all the help they give me.

    My tag line with my signature says it all...
    Last edited by Pete; 11-27-2013 at 07:32 AM. Reason: Added more information
    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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    Wegs has made me a happier and more grateful person but most importantly it has made me grow stronger in The Faith.
    Phil Berggren, dx 2003

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    Hi Sheila,
    the title of your thread can be answered twice, regarding the body (which organs) and/or the soul (like Phil wrote).
    I have involvement of lungs, nose, ears, joints and colon (rare). I had minor eye-redness and some rush on the skin (which I though was some alergy), and both were cleared by rtx. I hope it doesn't mean skin and eye involvement.
    as regarding the soul: for me2, WG makes me much more close to God.... (but this issue can't be deal here acording to the forum rules...I felt like a criminal last time I did it here ). WG makes me feel mixture of so many feelings, starting from depression and anxiety and going to peace and gratitude for having small things, like breathing better.
    and of course the precious gift that wg gave me is the membership in this amazing weggie family, and getting to know so many amazing precious people here.
    p.s. your baby is so cute and beautiful. give him kisses from me
    Last edited by Alysia; 11-23-2013 at 05:11 PM.
    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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    Let's see, I'll speak to the physical symptoms, since the weggie is my daughter, not me. At the time of dx at age 14 she had weight loss, appetite loss, bleeding in lungs & gut, 5 different types of rashes, joint pain, and nose & sinus involvement. And lung nodules. I feel like I'm forgetting something else...

    Since dx she has dealt with tracheal stenosis as well.

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    Duh. Was forgetting neurapathy...that & the fatigue are probly her hardest ongoing issues.

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    I had hearing, lungs,kidneys, liver, digestive system and heart. All fairly good at the moment but has left me with hearing aids, joint pain and of course tiredness and shortage of breath.
    Mike
    If you can't be positive be optomistic.

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    My journey started with an ear infection about 7 years ago. Had sinus problems ever since. An ENT alerted me that this could be wegs because of an elevated ANCA count. Nasal biopsy said no wegs. Fast forward 5 years and 4 docs, all telling me no wegs. Sinuses were deteriorating, constant infections, traveling rheumatoid arthritis, esophageal lesions, hives, skin lesions, BIG skin lesions. But, five docs still telling me I'm not sick enough to have wegs.

    Finally, 20 months ago, wound up in ER coughing up blood. Guess what? Wegs! 6 months of treatment of Cytoxin, pred, and 12 months of Mychophenolate immediately following, and this month a confirmed flare up. Took RTX to get it this time.

    So for me, it's sinus, lungs, ear (which seems to be OK for now). So far, kidneys for me are still textbook. Sinus I think is going to be my go to indicator for this disease. This time's flare was all sinus first, then the lungs. My ANCAs were always negative this round, but inflammation markers were all off the charts.

    How has it affected me? Please ask me again after I get through this round of treatments... Then, once I have a new 'normal' for me, I might have a better answer. So far, this past 20 months has been a mess, but is finally looking up.

    MikeG-2013
    Last edited by MikeG-2012; 11-24-2013 at 12:42 PM.

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    Sinuses, partial lungs, total pituitary.... Slowed me down by 50%. Lots of retirement plans have been scraped. Not bitter, but definitely disappointed.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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    Quote Originally Posted by vdub View Post
    Lots of retirement plans have been scraped. Not bitter, but definitely disappointed.
    yeh, I forgot about that dreams that have to be abandon ....
    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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