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Soon to start Dialysis and I am scared. Please help

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  • Soon to start Dialysis and I am scared. Please help

    Im writing this on my husband's account, his GFR has gone down to 13 and creatine to 5.1 and I know Dialysis is near. His fistula surgery was just last week Tuesday and he has been home ever since, he won't consider going on disability he says he will die if he stops working. He says he feels fine and that I shouldn't stress over it but im scare. What if he needs dialysis before the fistula matures? what if we can't find a donor(he should be placed on the list soon just finishing a few things to be put on the list) Im just scared of the unknown I guess. All I do is cry all day and worry

  • #2
    Hi edgar223 - welcome to myDaVita! Thank you for reaching out here and sharing a bit about your connection to kidney disease. There are many other care partners of loved ones on dialysis in these forums, so I'm sure you'll be able to connect with people going through the same thing to find support, advice & inspiration.

    I also wanted to share some tools that I think you may find helpful. First, many dialysis patients are able to continue working! has some information on working while on dialysis: You and your husband can also speak with his local care team and social worker to discuss the benefits of working on dialysis.

    You and your husband could also attend a no-cost Kidney Smart class in your neighborhood: Kidney Smart classes are led by kidney disease education experts and are a good opportunity to learn more about CKD, the treatment options, kidney diet and to get your questions answered.

    I hope this helps a bit! Please let me know if you have any additional questions. Have a nice day!


    • #3
      If he needs to start sooner, they will fit him with a catheter for the short-term. There is a guy at my clinic who is doing just this, and working, too.


      • #4
        Hello, I am in stage 5 and I am preparing to have both of my kidneys removed in order to have a transplant. I am not on dialysis yet but my Dr. is preparing to place a chest port during the removal of my kidneys in order to access dialysis. Of course, like a normal human being, I am scared to death. Scared of not knowing what lies ahead for me. My kidneys are having to be removed because of the size and the pain they cause. I was diagnosed with polycystic kidney disease when I was 15 years old and up to recently really haven't experienced a whole lot of issues other than occasional kidney infections and of course fatique. Could someone that has had both kidneys removed give me some insight on what to expect? Thanks.


        • #5
          I understand your emotions and cobcerns, I was bore with 1 kidney, no one ever knew about it till I was 35 and felt sick. They thought I had kidney stones inittially. But over time things changed. When I turned 50 I was diagnosed with disbetes. That set things in motion for me. Initially my kidney was failing from stress due to 1 kudney, then my diabetes made things worse. Things were stable for awhile but then it came a time when I began to decline quickly my blood work was baf. My gfr was down to 11 and creatinine was 5.33. Besides the numbers I wa feeling sick. I had trouble with the fistula and that delayed starting dislysis. They had to correct the fistula I'm hoping that it's ready for yse.
          I am on the transplant list and was told the average wait time is 4 to 6 years. I worry about getting a kidney I worry about dialysis. I should start very son and will be 3 times a week with each session 3 to 4 hours. I am on disability for other health issues.
          I fear am I approaching the end f my life. I will be 64 this month. I can't think negatively. But having tribe not wondering what is in store for me. At times I feel like a lost soul in a crowded room not knowing where to turn.