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CKD patient since January 22, 2018.

Posted , 4 users are following.

kherin15716
kherin15716

I am 30 years old, fit and healthy except for my kidney. I just discovered it this year, and now I am doing Peritoneal Dialysis. So I've reach the stage 5 of it, I think so. My eGFR went as low as 3 and my creatinine went as high as 1500+. I started dialysis a month ago. (It was a complete shock to me.) I wonder if there are on PD here, who is on the cycler for a while. What do you do when you travel for 3 to 4 days?

2 likes, 5 replies

5 Replies

  • marj01201
    marj01201 kherin15716

    Posted

    Knerin, 

    I can't even imagine what a shock that must have been for you!! I'm currently in Stage IV with creatinine of 2.75 and eGFR of 17-18. My renal function has been in Stage V for about a year though. I began improving a little last September, thankfully.

    So at this point I'm not yet on dialysis but know that is in my future. I do plan to try PD dialysis first. Consequently, I'm interested to hear what others share with you as well as anything you may choose to share with us.

    Are you using the cucler right now? Of not, what are your experiences going several manual exchanges a day? Also where are you thinking of traveling? It's supposed to be fairly easy to travel when using PD. I gather that the main issue is getting the supplies shipped to your travel destination--if you're traveling out of the country I'm not sure that insurance will cover the fluid, etc.

    Anyway, I'm very interested to hear what you and others have to share on this topic!

    Marj

    • kherin15716
      kherin15716 marj01201

      Posted

      Hi Marj,

      Good to hear that you are doing better. I'm using cycler. It is convenient. I do it st night as I go to bed. And I work during the day. I have not tried using twin bags yet, so I've never done exchange. I just wanted to visit the Niagara falls. I am 500+ kms away.

      Yes, me too I am interested to hear from the rest here.

      I wish you well.

  • Janinec87
    Janinec87 kherin15716

    Posted

    Hi there, It always shocks me knowing someone didnt know about there ckd and reach such a low function when they find out, a friend of mines husband also reached 3% when he found out. I am at 9% creatinine 669, no treatment as of yet but my brother is being tested to donate to me. If you are female then there is a great Facebook page 'womens renal support group' if you are male or other (you never know) there is a renal page on facebook thats good for support xxx

  • rick39522
    rick39522 kherin15716

    Posted

    I am like others who have responded to you in hearing that you did not know you had a problem until you were at stage 5.  And so quickly put on dialysis because of it.  Especially at such a young age.  It goes without saying I wish you the best and remember you will find many wonderful supportive people here if you need it.  None can change the condition of each other, but we can all be here for each other when we reach those moments we just need someone to talk to.  People who understand, do not judge, do not give false encouragement but just share their experience.
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