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Thread: Dialysis choices

  1. #11
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    Thanks God for the better blood tests. And thank you Pete for your clear explanation and info. Then you are alreay in remission. Thats good. And your treatment sounds perfect. Hang in there. Keeping you in my daily 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.

  2. #12
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    My goodness. All of this sounds scary from word one. I am glad to hear that you are back in the 18% range. Perhaps that transplant is not as far off as you were now thinking. I'd give you one of mine!! Of course, I also have WG/GPA but my kidneys haven't suffered yet!
    Dialysis sounds frightening to me. It always has, way before it was on my radar this much.
    I will continue to send good thoughts and prayers your direction!!!
    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

  3. #13
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    Just a data point - may differ with others - I have no idea how this works. In my case, my kidney function improved over a year and a half time frame from 18 GFR to 26 GFR and knock on wood may continue to improve. Every few months, up to and including my last test last month, there has been a small but significant and seemingly stable improvement in my kidney function. For several months at time it remains with in a range and then suddenly a bigger improvement occurs. It's a mystery but a good one!

  4. #14
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    Quote Originally Posted by LisaD1 View Post
    Just a data point - may differ with others - I have no idea how this works. In my case, my kidney function improved over a year and a half time frame from 18 GFR to 26 GFR and knock on wood may continue to improve. Every few months, up to and including my last test last month, there has been a small but significant and seemingly stable improvement in my kidney function. For several months at time it remains with in a range and then suddenly a bigger improvement occurs. It's a mystery but a good one!
    That is wonderful. This is what I was hoping for gilders to happen.... What meds are you on ?
    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.

  5. #15
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    Thank you for your words of encouragement and hope that my kidneys will recover function.
    I also hope that this is the case, but realistically, it's highly unlikely.
    My kidneys have been damaged and have been partially recovering for over 20 years. But no matter how much they fight and recover, they are overall on a downward spiral.

    I really need to get prepared for dialysis (physically) by "growing" a fistula or having a catheter put it place. The fistula will especially be a good idea as it can be in place unused for a long time (maybe indefinitely) and if my kidneys do hold out for a long time, at least it will be ready and fully "grown" when the time comes.
    Diagnosed April 1995

  6. #16
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    Quote Originally Posted by Alysia View Post
    That is wonderful. This is what I was hoping for gilders to happen.... What meds are you on ?
    I am only on 5 mg prednisone! nothing else. I did have a high dose prednisone event in the hospital for asthma a few months ago but relatively quickly tapered back to 5 mg pred. and I am feeling better than ever. My kidney decline only really went south very fast 2 yrs ago so I haven't suffered declining function for a long period - checked monthly. I was treated w/ cyclophosph (sp) and pred about 6 months after the decline began. I expect some function is lost for good (one kidney mostly atrophied per scans) but I'll take what I have for now!

  7. #17
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    something to cheer you up gilders, and others.... : World?s First Implantable Artificial Kidney Could Enter Human Trials By 2017
    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.

  8. #18
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    Quote Originally Posted by Alysia View Post
    something to cheer you up gilders, and others.... : World?s First Implantable Artificial Kidney Could Enter Human Trials By 2017
    Wow thanks Alysia.

  9. #19
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    Gilders - thank God! make sure you drink lots of water in the days before the blood work so not dehydrated! Hoping the 18 % stays the same or gets even better.

  10. #20
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    Thanks Alysia. Usually these type of stories are about solutions that might become available MANY years in the future, but this one expects trials next year and possibly be available in 2!

    I'm just waiting for 3D printers to make functioning kidneys. I could have a few on stand by, in all different colours!

    The sentence "only one in three dialysis patient survives longer than five years without a transplant." , scares me so much. On one hand I have been getting stressed/upset with this looming over me, but it has also made me appreciate the small things in life so much more.
    I feel stupid that I've known for over 20 years a time will come that I need dialysis, but only thought about the hassle of dialysis, rather than the poor life expectancy.
    Diagnosed April 1995

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