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Thread: I'm hellojulie and this is My Story

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    Default I'm hellojulie and this is My Story

    I'm 73, married 46 years, 11 grandchildren. I was active, and in good health, up until May of 2017. I felt (I remember this distinctly) a sudden plugging of both ears, as I was driving. I thought "Oh, great, right before a trip."

    Two days later we were on a plane on the way from Baton Rouge to Seattle, heading ultimately for BC Canada to see my brother.

    By the time we got back a week later I had sinus and ear problems which lasted all summer. August 17, sudden paralysis of the feet and right hand put me in the emergency room (where an x-ray showed nodules on my lungs) and then the hospital, Our Lady of the Lake, in Baton Rouge.

    A young doctor, just as I was going in for an MRI, said, "I think you have Wegener's." First time I'd ever heard the word.

    A week of tests later, including biopsies of the lungs and kidneys which were diagnosed at the Mayo Clinic, and I was started on four plasma exchanges and put on Rituxan once a week (for four weeks) at the nearby cancer center. Of course I was also given massive prednisone doses, and oxycodone for pain in the legs and hand, as well as for generalized pain.

    I am now in remission but have permanent "drop-foot" and neuropathy, have gone from a walker to a cane, can no longer drive of course, and have a great excuse to not go places! Husband taking good care of me, especially making sure I get my meds on time. Rheumy doc has me on Cellcept, 10 mgs of pred, blood pressure meds, and gabapentin. I see the kidney doc, the pulmonolgist, my GP, and Pain Management docs on a regular (six weeks to two months) basis. I am often very tired, and do not go out except to appointments, but, hey, lots more reading-time! Church, sometimes.

    As I read of others' stories, especially your young ages (God bless you all) and often late diagnoses, I am astonished at the speed and effectiveness of my own diagnosis and treatments.

    I think if I had not had the paralysis, leading to hospitalization (and the lung x-ray) my kidneys would have failed, and I'd have a different story -- if I was still alive.

    THANKS for all your stories -- I am learning a lot and will give this site to ALL my doctors!! Thank you, Andrew-from-Canberra!!
    Last edited by hellojulie; 12-08-2017 at 10:43 AM. Reason: additions, and mistakes

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    Default Re: I'm hellojulie and this is My Story

    Quote Originally Posted by hellojulie View Post
    I'm 73, married 46 years, 11 grandchildren. I was active, and in good health, up until May of 2017. I felt (I remember this distinctly) a sudden plugging of both ears, as I was driving. I thought "Oh, great, right before a trip."

    Two days later we were on a plane on the way from Baton Rouge to Seattle, heading ultimately for BC Canada to see my brother.

    By the time we got back a week later I had sinus and ear problems which lasted all summer. August 17, sudden paralysis of the feet and right hand put me in the emergency room (where an x-ray showed nodules on my lungs) and then the hospital, Our Lady of the Lake, in Baton Rouge.

    A young doctor, just as I was going in for an MRI, said, "I think you have Wegener's." First time I'd ever heard the word.

    A week of tests later, including biopsies of the lungs and kidneys which were diagnosed at the Mayo Clinic, and I was started on four plasma exchanges and put on Rituxan once a week (for four weeks) at the nearby cancer center. Of course I was also given massive prednisone doses, and oxycodone for pain in the legs and hand, as well as for generalized pain.

    I am now in remission but have permanent "drop-foot" and neuropathy, have gone from a walker to a cane, can no longer drive of course, and have a great excuse to not go places! Husband taking good care of me, especially making sure I get my meds on time. Rheumy doc has me on Cellcept, 10 mgs of pred, blood pressure meds, and gabapentin. I see the kidney doc, the pulmonolgist, my GP, and Pain Management docs on a regular (six weeks to two months) basis. I am often very tired, and do not go out except to appointments, but, hey, lots more reading-time! Church, sometimes.

    As I read of others' stories, especially your young ages (God bless you all) and often late diagnoses, I am astonished at the speed and effectiveness of my own diagnosis and treatments.

    I think if I had not had the paralysis, leading to hospitalization (and the lung x-ray) my kidneys would have failed, and I'd have a different story -- if I was still alive.

    THANKS for all your stories -- I am learning a lot and will give this site to ALL my doctors!! Thank you, Andrew-from-Canberra!!
    Welcome to our forum. Sad you need to be here but glad you found us. I think your story confirms that doctors are getting better at recognizing Wegs (GPA) which is good and may help prevent much of the damage many of us incurred from delayed diagnosis.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: I'm hellojulie and this is My Story

    Hi Julie,

    Welcome to the prestigious club of Wegeners!

    That is a really good to hear they spotted it so soon and the more knowledge there is on this the better for everyone, thanks for shearing and hope the treatments keep working :-)

    Ben
    Ben


    Diagnosed in 2013


    Never, never, never give up! (Winston Churchill)

    What screws us up the most in life is the picture in our head of how it is supposed to be.... (Not found out yet)

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    Default Re: I'm hellojulie and this is My Story

    Welcome to the family, Jullie. Thanks God you were diagnosed fast enough and got the right treatment. It takes time to be back on your feet. Meantime listen to your body, rest as much as you need, dont overdo, try only gentle walking. Feel free to ask whatever you want. God bless you.
    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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    Default Re: I'm hellojulie and this is My Story

    Thank you, a lot. Fatigue is a big problem right now. I am in bed a lot the past week and think I may be having a flare. Seeing rheum doc next week but will call before then. I always feel better after taking my oxycodone, which is every eight hours. Thanks you for the advice about the walking and the resting. It's the first that's hard to do right now!

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    Default Re: I'm hellojulie and this is My Story

    thank you!

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    Default Re: I'm hellojulie and this is My Story

    Fatigue has continued to be one of my biggest problems and I'm 8 years into the disease. I think some of the fatigue is the disease, but a lot is side-effects from the drugs I take. I have a lot of days where I wake up and know that I'll be going back to bed in a couple hours. I have had spells where I was totally wiped out and would sleep for 48 hrs, waking up only to go to the bathroom.
    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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    Default Re: I'm hellojulie and this is My Story

    Welcome!
    Hopefully some energy will return soon.
    I go through periods of struggling to get out of bed and having to use my cane, to being able to walk (no cane) a good distance (albeit at a slower pace than most people my age). Just make the most of the good days and rest when your body tells you to rest.
    Diagnosed April 1995

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    Default Re: I'm hellojulie and this is My Story

    Thank you for your welcome, and your reply about fatigue. What are your medications? (or can I ask that?!?) Do you have serious vasculitis? (I'm told that Wegener's IS vasculitis, but my Wegs led to paralysis in both feet. It seems to me that few Weggies get this.) Anyway, best of luck in the future, and thanks again -- I will write again if my doctor has a permanent solution for this everlasting tiredness!

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