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Thread: First rituximab infusion

  1. #31
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    We worked it out by my mom having a chat with him. She is staying in town a few days longer to help, and will care for my son (he's 10 years old but still very attached) during the day and his dad will keep him at night, until he's better. Phew. So relieved. I don't think my son really understands but hopefully he'll get that it's not that I don't want to be with him. I really miss my kids when they're not with me, but I won't be any good to them if I'm too sick to take care of them. I wish I lived near my family. it's amazing that they're here to help though. Thanks for the advice! Much appreciated.
    Last edited by LisaT; 09-13-2017 at 11:49 PM.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

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  3. #32
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    Hiii!
    Don't worry about how long it is taking you to feel better. It knocks me on my butt every single time. This time was much worse and I think it was because I felt so great before I did it.
    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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  5. #33
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    Lisa, hoping you get better soon. It's really hard to tell your kids to that your sick and you need to heal. If you don't get better then you can't take care of your children. I just tell my kids I will make up to them and I love them a whole bunch.
    I was surprised after my second rituxan I had so side effects.
    I got my CPR lab results and they were a little elevated , so up a little from last month. So little worried, and I'm on so many immunosuppressive drugs and then got the rituxan the end of August .
    As long as we communicate to our doctors if are symptoms get worse or not getting better is the best thing you can do for yourself.
    Lisa let us know how your doing.

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  7. #34
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    Alysia, I was around 12 , but my mom told me I complained of knee pain younger than that. I had pink eye as a kid that just kept coming back . The rheumatologist diagnosed me with rheumatoid arthritis at age 12. As a teenager I was in denial and lived my life as a normal person but knew someday I end up with a kidney transplant but still pretended I was normal . I'm just lucky to be alive! I've had a laundry list of surgeries and complications... But despite all the big bumps I wasn't going to let this disease get me. After my kidney transplant I became a RN and then went on to get a two college degrees. I couldn't have children so I adopted two children, they were infants when I adopted them. I still work full time but the last few months I could not work.
    I learned to communicate to all the specialist and just don't stop or ever give up. There is always one doctor who will listen, just need to find the right one for you. I also started to listen to my body and that gut feeling that you get, that something isn't right.
    All those children who received a kidney transplant , you can live a pretty good life! Just follow up with transplant team and nephrologist . Be compliant with your medications. I had my kidney transplant since 4/89, almost 30 years!!

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  9. #35
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    So glad she had a chat with him. It's so hard when the little one's don't really understand and we as mom's feel so bad. But, you have to look after you first to be able to be there for them. They know you love them and that's all that counts Keep smiling and lots of rest

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  11. #36
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    Quote Originally Posted by elephant View Post
    Alysia, I was around 12 , but my mom told me I complained of knee pain younger than that. I had pink eye as a kid that just kept coming back . The rheumatologist diagnosed me with rheumatoid arthritis at age 12. As a teenager I was in denial and lived my life as a normal person but knew someday I end up with a kidney transplant but still pretended I was normal . I'm just lucky to be alive! I've had a laundry list of surgeries and complications... But despite all the big bumps I wasn't going to let this disease get me. After my kidney transplant I became a RN and then went on to get a two college degrees. I couldn't have children so I adopted two children, they were infants when I adopted them. I still work full time but the last few months I could not work.
    I learned to communicate to all the specialist and just don't stop or ever give up. There is always one doctor who will listen, just need to find the right one for you. I also started to listen to my body and that gut feeling that you get, that something isn't right.
    All those children who received a kidney transplant , you can live a pretty good life! Just follow up with transplant team and nephrologist . Be compliant with your medications. I had my kidney transplant since 4/89, almost 30 years!!
    Thanks for sharing your amazing story, elephant. You are able to live a whole life even with the wg. It is great. I am glad that you are doing so well with the kidneys transplant. Tagging @gilders - to cheer him up.
    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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  13. #37
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    Good luck with the second IV today, Lisa. Sending prayers ❤ Please update us.
    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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  15. #38
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    Alysia, thanks for tagging me into elephant's story.
    The transplant still working after almost 30 years is amazing.
    I've got an appointment with the transplant team tomorrow. I have to attend with the donor ( my dad) for tissue matching. I think we're getting close to surgery now.
    I'm still afraid as my bleeding problems haven't been diagnosed yet. I saw the haematologist today. He's now checking to see if I have warfarin induced skin necrosis or Christmas Disease.
    Diagnosed April 1995

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  17. #39
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    Hope the tissue match goes well. Keep us updated!

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  19. #40
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    I am wishing you all the best with your transplant. Please let us know how things are going for you. Please take good care of yourself.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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