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Thread: Dialysis choices

  1. #51
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    Default Re: Dialysis choices

    UPDATE
    I started this topic over 18 months ago to help any others that are needing to look into dialysis. I expected that I would be on dialysis within a few months and hoped for a kidney transplant within a year. It has become a kind of journal of my journey and has evolved from dialysis choices to transplant.
    The good news is that, miraculously, my kidneys are still holding out at 14%. The bad news is that the transplant still hasn't happened and I'm running out of time.

    I had a good enough tissue match with my dad, but when they physically mixed our blood, there was signs of rejection. I have many different antibodies due to the multiple blood transfusions I received when I was first diagnosed with Wegener's and on death's door. They have decided to repeat the tests to see if the reaction is less this time. I will find out the results about a week before Christmas, but it doesn't look too promising.

    If the reaction is not too severe then there is a possibility of giving me plasmatheresis before the transplant and having me take a stronger dose of immunosuppressants after. The immunosuppressants have bad side effects and being severely immunosuppressed puts me at risk of fatal infections. So it's not an easy solution considering I'll need to take them for the life of the kidney.
    My other option would be to have my donor swap with other donor/s, but there will still be a struggle to find someone compatable due to all my antibodies.

    I may start a new thread titled "transplant" for any more updates considering I've strayed away from the original topic of "dialysis choices"

    I received my first Christmas card of the year today, so I'll take this opportunity to be the first (at least I think I'm the first) to wish you all a very Merry Christmas with good health and cheer!
    Diagnosed April 1995

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  3. #52
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    Default Re: Dialysis choices

    Yes, indeed, Merry Christmas to all! And, I hope you find a match soon.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

  4. #53
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    Default Re: Dialysis choices

    Thank you for the update, Pete. Thanks God that your kidneys behave, waiting patiently to be replaced.

    I hope that the blood issues can get a good solution soon. I had a thought, please forgive me if its too foolish: my blood type is AB minus. During my pregnancies I got few shots in order to prevent my blood to hurt my babies', in case that their type of blood is positive. Acording to this rational, is there any shot or other intervention that your father can get in order to protect you from a different blood type ?

    Wishing you a blessed Christmas, with the gift of perfect new kidney. Keeping you allways in my thoughts and prayers.
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

  5. #54
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    Default Re: Dialysis choices

    Quote Originally Posted by Alysia View Post
    is there any shot or other intervention that your father can get in order to protect you from a different blood type ?
    It is my antibodies that would "attack" the new kidney, so it's me who would need extra treatment, not my father. It's not my dad's blood/tissue that would attack me, but me that would attack my dad's blood/tissue. So treating my dad wouldn't help.
    Diagnosed April 1995

  6. #55
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    Default Re: Dialysis choices

    Quote Originally Posted by gilders View Post
    It is my antibodies that would "attack" the new kidney, so it's me who would need extra treatment, not my father. It's not my dad's blood/tissue that would attack me, but me that would attack my dad's blood/tissue. So treating my dad wouldn't help.
    When Phil was candidate for lungs' transplant, the transplant dr. told us that he had done 3 transplants surgeries to weggies, and that thanks to the meds which were powerfully preventing the body from attacking the new organ, also the wg became totally quiet.
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

  7. Likes drz liked this post
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