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Waitng Almost 10 years now for the second time

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  • Waitng Almost 10 years now for the second time

    I have been on the waiting list almost 10+ years now I keep being told i should be at the top and it will be any day now "YEAH SURE" I have been hearing this for last 3 yrs i guess they forget what they say sometimes. I admit i did receive a call once before at the very beginning but I said No but I was not ready then I would have been a fool to say yes knowing that some one else would have appreciated it more than I at that time. I now find myself waiting and not sure I'm ready for it this time. I will be honest even after having had many surgeries it stil scares me but the thought of not having to go to dialysis anymore is very inviting. Only time will tell how this story ends.

    Texas,
    Last edited by julioTX512; 12-06-2014, 10:38 PM. Reason: realized i misspeled

  • #2
    Hello julioTX512,

    Thanks for the interesting if disheartening perspective. I've been an HHD patient for going on 2-1/2 years and have seamlessly assimilated the HHD regime into an active work and play life. The success with HHD, contrasted with the unknowns of kidney transplantation: major surgery, meds that harm the graft and hammer the immune response so that the common cold or other bacteria can lead to illness that can cause the graft to fail, developing new antibodies that make a future transplant match even more difficult, requiring a longer wait for a transplant all add up to my lack of enthusiasm to receive a transplant.

    As an HHD patient, I don't "go" to dialysis. I conduct 5X treatments each week and I conduct these to mesh with my schedule and to meet or exceed the therapy prescribed by my nephrologist by using all the dialysate I produce with the NxStage Pureflow SL and performing a mix of nocturnal and daily treatments that allow me to get up to 23 hours of hemodialysis each week - a level that is close to 100% more than most patients that receive in center dialysis three times a week. It's no wonder that I feel great and my lab results are consistently excellent.

    Provided that my care partner, HHD clinic team, nephrologist and I are able to continue to acheive these results, I'll be inclined to take a flyer on an available cadaver kidney and let it pass to the next person on the list that is probably a lot worse off than I.

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    • #3
      Hello Stumpr54

      Interesting perspective for your point of view Stumpr, my story is alot more elaborate than the brief summation I posted. I cannot do any kind
      of home treatments due to the numerous infections i had when I was on it so I am no longer a candidate for any HHD. So my ONLY other choice
      other than Hemo is a transplant and in my mind not much of a trade off since I agree with you that transplant is MAJOR surgery and the
      the very strict regimen of pills that have to be taken and really cannot be missed at all and all the appointments that I will have to depend on
      someone else to take me since I would be under restriction as to not strain myself. So again time can only tell what the future has in store
      and what my response will be when that phone call comes if it ever does come. Thanks for your response take care and god bless

      Texas

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      • #4
        I had another ultrasound done today I keep hearing anytime now. I was told to be ready have a bag packed but the more I hear that the more
        I am getting really scared. I feel like once i get a transplant what do i have to look forward to. I tried to build a life while on dialysis several time
        and always due to medical reasons something didn't work out. I put so many things on hold because I thought that I would always have the chance to get to it later and now much of my life has passed me by and I have never married never had children etc. I don't even have any one that I can
        honestly I can really turn to to or count on being there. I begging to think that maybe the transplant would be better for someone that has an actual life
        I guess my life began with dialysis and I am thinking its probably better if it end there as well.

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        • #5
          Hi my name is rachel I been on dialysis for 10 years also but I know that there's a kidney out there for us I trust in God that anytime soon have fe any moment it will be our time, am also afraid but I been married for 15 years have a son and husband to live for they are my angels sometimes I give up but then I thing about my angels have to be strong for them still here waiting

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          • #6
            Hi Rachel I hope you get your kidney soon. Have you been on the transplant list for the whole 10 years? I saw on KidneyBuzz.com they will make a page to help search for donors for free. I am only stage 3b at the moment. I know the hoops you have to jump through to get on the transplant list is a long one. Are you listed at more than one transplant center? I assume your husband can't be a donor for you? if he is able to donate and it isn't a match to you there is a donor exchange. He could exchange with someone else so you can match sooner. I am sure you have looked into any avenues that you have. I hope you get your match soon. Keep up the fight.

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            • #7
              I am also scared about the prospect of having a transplant too, I have been on the list about 4 1/2 years. I was impressed to hear stump54's experience. I did HHD for most of that time that I have been on dialysis, I am in-center now, HHD was a trying experience on me and especially my wife. Although, there are some benefits, to HHD, it was too much on my wife. Stumper54, I am sure you are grateful for your partner. I didn't know you could do HHD at night, I would be scared I would yank one of my needles out and blleed all over the place, in my state, North Carolina, they do have a nocturnal program in-center. I think I would jump at the chance if a kidney became available, I am running out of places for a suitable access, if my graft fails me, the only option I have left is in my groin.

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