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Thread: Hello from Indiana

  1. #1
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    Default Hello from Indiana

    I'm new to this forum but very glad that I have found it.

    I was diagnosed with WG in 2008 at the age of 21. I have had many many surgeries and been in 7 comas since then. I have had some good years and I have had some bad years. I will have on going surgeries for the rest of my life.

    I'm very thankful that I have found my doctors!! They take every little thing seriously! My flare ups hit very fast!! Last year in September, things were getting better and started coming down on the predinsone... Well, by the time Novemeber came I had to have major surgery!!! The doctors gave me a 30% of living through the surgery. The WG had eaten a hold through my lung and I was filling up with blood. They did surgery and removed my entire upper left lope and 1/3 of the bottom. The hole was the size of a tennis ball. I had only 24 hours to live. I was in a coma for a week after the surgery. No one thought I would come out alive. But miracles do happen!! I was in the hospital for a full month after that. And today, I'm still struggling with my tracheal stenosis. But I am doing a lot better.

    I am hoping to be able to have another baby, but so far I have miscarried every time we have tried. But God has blessed me with two beautiful little girls!

    I know that this is a hard disease to deal with day in and day out. The pain that never goes away and having to "live on medications" gets old, but you can make it!! I wish that I could share every detail with you but it would be SO much! I have had my 4 year old in the room with my husband talking to me while in a coma. No I don't remember it, but there were pictures taken. It's hard to think that my babies have to grow up with their mother being in the hospital so much, but I know that God has a much bigger plan! And I can use my experience to help others.

    I have been asked to write a book. And think i have taken that challenge and I'm going to start it. So maybe in a few years it will be done. 😊


    Miracles do happen!!

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    Welcome. Sounds like your experience was a rough one. But proof of your statement and name

    Its never good to learn GPA has found another. But its also comforting to know we aren't alone. I am glad you found this group. The people are wonderful and very helpful.

  3. #3
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    Hi Miracles and welcome to the forum.

    What an ordeal you have been through at such a young age.

    I am so glad that you are still here and also that you found this site and are able to talk about your experiences.

    Gosh, by the sounds of it, your book is going to have a lot of pages

    Take care and as always ..................
    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

  4. #4
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    I'm glad to hear your story, Miracles, though of course it would better if you didn't have it to tell. Thank goodness you lived through that big hole in your lung and are here to tell about it. Writing a book sounds like a great undertaking, and I'm sure you are up to the challenge. We will be thrilled to hear about it if and when it happens!
    Anne, dx'ed April 2011

  5. #5
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    Welcome Miracles!
    You have an amazing story.
    What kind of treatments did you have to reach remission?
    Last edited by mrtmeo; 11-30-2014 at 12:59 PM.

  6. #6
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    Well my first remission was with 18 months of high does of MTX and pred. Then I got pregnant with my first child and that kept me in remission. Then I had a flare up and had to go back on them. And was only one them for about 4 months but I lived in a different climate which helped I think. Then I got pregnant with my second baby which again helped. But after she was born which was almost 3 years ago, I have been sick. I have not been able to fully come into remission. The MTX was not working so I started on a round of RTX. That helped but I still on high dose of MTX and the doctor is trying to bring me down on my pred.

  7. #7
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    Welcome, we are practically neighbors, I live in east central Illinois.

    Where do you go for your treatments?

  8. #8
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    I do all of my care through Lutheran Hospital in Fort Wayne, Indiana. They are really good!!!! If I call with a problem they get me in right away.

  9. #9
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    Wow! I have not had the same start as you but my heart shares ur burden of our babies growing up with a sick mom. I too was on methatrexate and went off to get pg. Stayed in remission during pregnancies. I have 2 also. Since my youngest 4 years ago i really have not been healthy. But wow what a story. We cant live without air..and we need our lungs!!!! I have a stenosis also.

  10. #10
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    I'm also from Indiana (I split my time between Bloomington, where I work at Indiana University, and French Lick in Southern Indiana, where my husband and I have our home).

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