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In My Sneakers

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  • In My Sneakers

    To make a long story short.I'm 37 and my function is at 12%. I was born with a small bladder that damaged my kidneys beyond repair ( i never knew it until 2 years ago). After numerous surgeries and countless hours of pain and recovery ,my bladder issues have been repaired leaving me with failing kidneys.....So i began the battle to save my kidneys.In the meantime,i have been put on the transplant list and have started the renal diet.My Dr's say I'm excellent candidate for a transplant.My goal was to fight and do all that i can to hold off on dialysis until my transplant came up.i thought i would have time,but i dont think i will make 3 years or even 3 months without help.My brother & sister have offered me their kidneys.My brother is being tested next week .Dr's say even if he is a match, i would have to wait about 2 months before we can operate.I feel pretty bad these days.I'm tired & my concentration levels have been pretty low.It's been difficult to function,but i do.
    i still need to get my fistula.Sometimes i wake up and wonder why should i bother fighting off dialysis? Maybe i would be better off starting hemo?(catheter does sound scary)Maybe dialysis would help take me out this "haze" that i have been stuck in? It's tough because sometimes i feel like i can make a few more months,but then there are the "BAD" days with dizziness and nausea.

  • #2
    I know exactly how you feel. I felt terrible too before I started dialysis and my kidney function was higher than yours. I did get my fistula 6 weeks before I started hemo.

    Your transplant prognosis should be very good with your young age and a sibling donor. Best of luck to you.
    Whatever does not kill me makes me stronger...Neitzsche
    Flip

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    • #3
      I feel for you. I have been where you are and I was miserable. I feel much better -- less nausea, less "haziness", more energy -- now that I am on hemo 3x per week. You should think about going ahead and getting a fistula placed in case things don't work out with your transplant and you have to wait for a while. They take from 2 to 4 months to mature enough for use. Even if you might be able to get a transplant from one of your siblings in the next few months, you might feel better if you did some form of dialysis.
      To the stars through difficulty!

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      • #4
        dialysis at 12%

        A fistula is not a painful procedure or after effect. I'm a man so they don't look bad and indeed if you only have the a year or so, that don't look bad. Mine is on my arm and no one save one of the dialysis crew has ever made a comment about it. I do wear short sleeves and it is mid arm, half below the elbow and half above.
        The dialysis will make you feel so much better while you wait on the whatever happens, you'll be amazed.
        Wouldn't lead you astray for the world.
        Catheter is not too bad except for the infection avoidance, no showers and that sort of stuff. It is not as effective as a fistula and you won't feel as good, but in my case it kept me from death.
        The bad part is that a fistula takes about two months to mature enough for use. But then a 2 month estimate from the Dr might be 4 months in reality.
        May God have mercy on us all

        CK

        Idiopathic globular membranous nephritis 1999-2006
        Feb 2006 Dx about 1-2 yrs before dialysis. Dialysis start 6-2006
        Chest Cath 4 mos in center hemo dialysis
        Fistula, button holes, self stick days 07-09 in center hemo
        Graft nocturnal hemo 4Q09 to present

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        • #5
          It may depend on the location, Cicero. Mine is in the wrist and it was fairly painful. I was given a lot of morphine in recovery and took a lot of Loritab for a week or so afterwards. No problems after that but it did take about 3 months to mature. They just started dialysis with a smaller needle and gradually increased it as the fistula matured.
          Whatever does not kill me makes me stronger...Neitzsche
          Flip

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          • #6
            Re: In My Sneakers

            May be, I was a smoker for many years and had no veins in the wrist are that would work. Fistula is about 2" below the inside of my elbow and then goes up my arm for about 10 inches. Use one button hole 1" above start of fistula and the other about 1" above the inside of my elbow. Also I may be fairly pain insensitive as I have had a crown installed with no pain killer, that is after the tooth had been prepared.
            May God have mercy on us all

            CK

            Idiopathic globular membranous nephritis 1999-2006
            Feb 2006 Dx about 1-2 yrs before dialysis. Dialysis start 6-2006
            Chest Cath 4 mos in center hemo dialysis
            Fistula, button holes, self stick days 07-09 in center hemo
            Graft nocturnal hemo 4Q09 to present

            Comment

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