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Thread: Hello! new member but have had WG for a long time!

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    Default Hello! new member but have had WG for a long time!

    Hello! This is the first time that I have ever posted my story on a forum so this is pretty new for me
    I am currently 28 years old and I have had WG since I was 13 years old. I originally didn't know that I had it until I relapsed at 21 years old.
    When I was 13 I got really sick suddenly. I was very weak and nauseous one day, my mom took me to my primary doctor and he ordered blood work for me. Once the results came back my doctor called my mom and told her to take me to the hospital right away because I was going into kidney failure. My mom took me out of school and rushed me to the ER. Once at the ER I was given a blood transfusion and was rushed to surgery for a bilateral biopsy of both kidneys. I stayed in the hospital for a week (that was rough). I was told originally that I had rapidly progressive kidney nephrititis (since I had no other symptoms at the time).
    I put on prednisone, cellcept and bunch of other meds. I had cytoxin treatments for 6 months, those were definitely some of the worst days by far.
    As time went on, I started doing really well, well enough that my nephrologist started to lower my cellcept dosage. Pretty soon, I was off it completely.
    Fast forward to December 25, 2011 ( yup Christmas day!) I hadn't been feeling all that great for the month before Christmas ( I just assumed I was getting sick). I was really tired, had a stuffy nose and a cough.
    I woke up Christmas day with this severe pain on my left side, it was probably that worst pain I have ever felt. I am not one to rush to the ER for every little thing, but Christmas day the pain so severe that I had my sister drive me to the ER. Once I was inside they gave me a chest x-ray and found multiple nodules all over my lungs. They also found that my kidneys were failing again.
    So once again, I was admitted to the hospital, this time with the diagnosis of WG. I had never heard of it before but when my attending nephrologist told me about it, they symptoms made sense.
    I spent Christmas day and 4 days after in the hospital..I was happy to be out by New Years!
    Once I was out some of the hardest days were ahead me. I started to get nosebleeds almost every day. I knew it was part of the disease but some days the nosebleed were really horrible. They prevented me from doing things, I had to stop to blow my nose and when I did that it would just bleed again (I knew that would happen, but I just had to do it because it was so uncomfortable otherwise).
    After a year of nosebleeds they finally stopped!!!!! And I haven't had a bad one since.
    Its an everyday struggle for sure, every time my sinuses act I'm afraid its the WG coming back again. I've been doing well the past 7 years, here's to hoping it stays that way!!

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    Default Re: Hello! new member but have had WG for a long time!

    Wow, what a journey !
    Thanks a lot for sharing your story, and welcome to the forum. I believe that your story can encourage parents to kids with wg, since you were in a long remmision without meds for 7 years or so, if I understand correctly, before the second flare ? How are you doing since the second flare ? Are you getting any meds ?
    Feel free to share and ask. You have just came to the best place for weggies on the globe 🌏🌎🌍
    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: Hello! new member but have had WG for a long time!

    Welcome! What a terrible journey you have been on with this so far! I read stories like yours and others and feel a sense of guilt that I was lucky enough to have it caught so early on that I don't have any major damage. But, I also always feel like I am tiptoeing along the edge of a flare and am officially in my first real flare of my journey. It's only been 4 years since diagnosis.
    Thanks for introducing yourself. This is an amazing group. I flit in and out and always find myself getting mad that I don't stick around more. I need to make it a daily thing!
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

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    Default Re: Hello! new member but have had WG for a long time!

    Quote Originally Posted by NikkiNicole View Post
    Welcome! What a terrible journey you have been on with this so far! I read stories like yours and others and feel a sense of guilt that I was lucky enough to have it caught so early on that I don't have any major damage. But, I also always feel like I am tiptoeing along the edge of a flare and am officially in my first real flare of my journey. It's only been 4 years since diagnosis.
    Thanks for introducing yourself. This is an amazing group. I flit in and out and always find myself getting mad that I don't stick around more. I need to make it a daily thing!
    Truly amazing!
    So glad to hear that you are doing well now.
    It is inspiring to others.

    Sent from my SM-G920V using Tapatalk

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    Default Re: Hello! new member but have had WG for a long time!

    I actually was on cellcept but low doses the first time I was in remission. I think I was off cellcept for approx 6 months before I relapsed. But it's still a pretty long time.
    After that flare my doctors have been slowly decreasing my cellcept again but I don't think they are going to fully take me off of it again since that is most likely what triggered my relapse. Otherwise, I've been doing pretty well!

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