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Thread: First rituximab infusion

  1. #41
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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!!
    Wow! Wow! Wow!
    Of all the posts on here, this is the one that caught my eye for some reason and made me stop and read.
    Unreal the path WG has taken you on, and even more unreal (amazing/beautiful/inspirational) is the way you've reacted to the beastie.
    YOU my friend, need to write this down in a book or something.
    People just don't get it, and they need to if anything is going to change.

    Thanks for sharing this and inspiring me to get it together myself.
    Massive hugs.

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  3. #42
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    Quote Originally Posted by gilders View Post
    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.
    Another WOW!
    Your dad is donating a kidney. So unreal this group on here.

    I know a man who has the oldest kidney transplant in our province. He's well into his 80's and still golfs, skis, hikes, and is a beautiful human being. He's on 15mg of pred every second day (so 7.5/day) and on Imuran, but you wouldn't know it. Best of luck with absolutely everything.

    Stiskam paltzi. (The Bulgarian equivalent for crossing my fingers for you to have luck, but it's "I'm squishing my thumbs")

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  5. #43
    luan22 Guest

    Default Re: First rituximab infusion

    Wish you will not lose your hair anymore and will have beautiful hair

  6. #44
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    Default Re: First rituximab infusion

    Quote Originally Posted by LisaT View Post
    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.
    Hay Lisa,

    Hows your infusions going now?

    I have them every 4 months and took a week to recover when i first started with them 5 years ago, but luckily now can return to work a day or two after now. I always drink a lot more when on treatment to help it pass through and make sure i push myself to walk like Pete mentioned, on the day of treatment and the day after (not far just a kilometer or so) as i think in my head it helps pump it round and keeps the circulation going???

    The main symptoms i get now are tiredness and my legs feel like lead for a day or two, as i sit having the infusion for around 6-8 hours i think its like traveling on plains, sat in the same position on the infusion i need to get up and walk about when finished.

    I have 2 boys under 5 and was worried about infection to start with, but seemed what ever i did and however careful i was i always seem to get hit with what they bring home from school. Although i have never had masks, always been careful with hands and washing/sanitize.

    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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  8. #45
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    Default Re: First rituximab infusion

    Hi Ben,
    Fortunately for me, there's always been a bed available. I can not sit in one position for more than a few minutes. I also need the toilet frequently which is another excuse to stretch my legs during the infusion. Maybe you should ask for a few toilet breaks (even if you don't really need them)?
    Diagnosed April 1995

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