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Type: Posts; User: miracleshappen08

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  1. Replies
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    I have it. They found mine cuz they want in to do...

    I have it. They found mine cuz they want in to do a biopsy and could not get in my airway. But I have had to be watched and they will take a needle with some numbing meds and injected in to your...
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    A year ago I got my RTX treatment. I would swear...

    A year ago I got my RTX treatment. I would swear by it!!! It saved my life!!
    The way they do it is every week at the same time for 4 weeks, you get a dose. It can take any where form 4-8 hours to...
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    Yeah... This is the hard part for me and the...

    Yeah... This is the hard part for me and the doctors. My blood is coming fine, but the disease is still very active. I have been on MTX for years now and have had RTX. So I'm not sure what the next...
  4. Wow Jayne14!! It is weird and the places that it...

    Wow Jayne14!! It is weird and the places that it hits is weird!
    I had a ct scan done this past Friday. And I saw the doctor yesterday. The report was bad and nothing we expected!!
    I'm glad that...
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    Me2, I'm very glad for my husband!! He has been...

    Me2, I'm very glad for my husband!! He has been the biggest blessing to me! He does understand in the fact that he has had to sit by my bedside at the hospital knowing that I may never come out of a...
  6. RTX was an answer to prayer to me!! I had been on...

    RTX was an answer to prayer to me!! I had been on MTX for 5 years and my body was no longer accepting it so I was flaring up! I had a round in February and March and have been on MTX for remission...
  7. When I have been on the high dose of pred, I...

    When I have been on the high dose of pred, I actually would split the dose and take them 12 hours apart but I had to actually take them at 3 pm and 3 am. My body reacts differently then other...
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    If you can find someone close to you it is the...

    If you can find someone close to you it is the best. You will be making a lot of trips for this. I just started with issue last year since then I have had 6 surgeries. Once you operate on that area...
  9. Thread: Sleep

    by miracleshappen08
    Replies
    11
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    3,573

    Yup the sleep thing has been a tiring subnet for...

    Yup the sleep thing has been a tiring subnet for me. Lol As of right now, it's 2:38 in the morning and I have been up for an hour already. But you are right, you wake you in the morning feeling...
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    Glenda, there is hope, but it is finding the...

    Glenda, there is hope, but it is finding the right doctors!!! I really hope and pray you can find some.
    To answer your question about iron, I was anemic before but it got a lot worse after I was...
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    Oh wow! I know that WG CNA cause teeth problems...

    Oh wow! I know that WG CNA cause teeth problems but I didn't know it could be this bad. I have bleeding gums sometimes and there are times my teeth feel loose, I have not been to the dentist for...
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    Yes! I have been through a lot and I'm very glad...

    Yes! I have been through a lot and I'm very glad and blessed to be here to tell them to. I'm starting to write a book. 😉 it's going to take a while to write.
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    Last November, I had my entire upper left lung...

    Last November, I had my entire upper left lung removed and 1/3 of the bottom on the left side also. I had only 30% of living through the surgery. The WG ate a hole the size of a tennis ball in my...
  14. Oh, my I can relate with a lot!! Don't ever...

    Oh, my I can relate with a lot!! Don't ever believe everything the doctor tell you!! I was to NEVER have kids!! I have endometriosis, divide uterus, and WG. I was on treatment for 18 months when I...
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    I do all of my care through Lutheran Hospital in...

    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.
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    Lobectomy

    Has anyone had a lobectomy done cuz the WG has destroyed their lung?
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    2089 this just happened last year. It has been...

    2089 this just happened last year. It has been causing issues with breathing at night. And it can be uncomfortable sometimes.
  18. Totally talk to your doctor before you take it...

    Totally talk to your doctor before you take it again. You had a reaction to it. Next time it will be worse! I'm allergic to a lot of meds. It is awful!!!
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    Gilders, I have this blood issue too, but I'm in...

    Gilders, I have this blood issue too, but I'm in MTX and had only one RTX infusion. And my doctors have not come up with a reason either.
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    In my opinion this is worse then cancer. There...

    In my opinion this is worse then cancer. There are so many people who survive cancer or it goes away and they never have to worry about again. But we live with it for the rest of our lives!! And no...
  21. Thread: Iron

    by miracleshappen08
    Replies
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    4,413

    Yeah that is what is really low for me too. But...

    Yeah that is what is really low for me too. But last time they got this low my hemoglobin dropped really fast and I had to have a blood transfusion. You need the iron to help make new blood cells so...
  22. Thread: Iron

    by miracleshappen08
    Replies
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    I just got back from a doctor appointment... Grr...

    I just got back from a doctor appointment... Grr not the results I wanted to hear. My iron is very low like almost not there. He said that I should be able 100 and it's at 4. I have been very tired...
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    I hate pred, but yet it has saved my life!! The...

    I hate pred, but yet it has saved my life!! The high does will make everything so agitating!! When I'm in a high does, I cannot have the fan on in the bathroom. It's to annoying! And yet I have two...
  24. Thread: Iron

    by miracleshappen08
    Replies
    10
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    4,413

    I'm just getting ready to start taking the iron...

    I'm just getting ready to start taking the iron pills again... They make my so sick and can't go to the bathroom right.
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    I know that pred can really mess things up!! I...

    I know that pred can really mess things up!! I hate it but at the same time it has saved my life. My joints hurt a lot. There times when I cannot walk. So I'm sure your hip is related to the WG. It's...
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