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  • polycystic kidney

    I have polycystic kidneys know about them since I was 26. They have grown to the point that I going to have them remove because I can't hardy breath any more. The smallest one is 12.5 inch long by 8 inch. wide, the other one is13.5 inch. by 8.5 inch. that was in May. Last year they grew 4 inch. a piece, they are probably larger now because my breathing has become more difficult. Will be on dialysis for the rest of my life.

  • #2
    Cheer up, it's not that bad, and you won't have to be on dialysis for the rest of your life. Get a Kidney transplant. I also have PKD and have had two transplants and have been on PD for years. There are disadvantages but many advantages and you can and will feel better. You are blessed, you don't have Cancer. Everything you go through will work out, just think positive. You can get a transplant and it will work. Just know your numbers and if you are overweight be careful what you eat. That's the tough part.

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    • #3
      We didn't know you can have your kidneys removed if they get too big. I have PCKD and have trouble breathing too. I know it's because my kidneys are getting larger all the time. I would love a transplant. But was turned down by Virginia Mason Hospital in Seattle, Wa two yrs ago.
      I am older and they are worried about my COPD and my heart. Heck, my COPD has gotten better since I've been on dialysis. lol Anyway will check with my doc and see how it goes about having my kidneys removed. Thanks for you input. I agree with mtwskk, you don't have to be on dialysis forever. Maybe you CAN get a transplant. You are young and there are people here at my Davita Center that do get transplants.
      You Hang In There OK and Good Luck To You.

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      • #4
        I have APKD and have been on dialysis for 7 weeks now. My platelet count is taking a nose dive. I have been referred to a hematologist. So far, I am not encouraged by what I read http://www.kidney-international.org/...15)55515-4/pdf .
        Last edited by ducksonlake; 09-14-2016, 08:44 AM.

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        • #5
          My platelet count was below normal when I started HHD. It's been normal for the past 2-1/2 to 3 years of the 4 + years that I've been on HHD. I do run nocturnal Tx's at least twice a week, which dramatically reduces the trauma to body and blood of hemodialysis. Additionally, my Hgb has been 12.0 or higher since January 2016 without Epogen. I began dosing with IV Iron (Venofer) since July at 200 mg per week and that has kept my Hgb up there and best of all, I finally have put daytime somnolence behind me since November 2011. I am 62 and continue to work full time and lead an active work and play life. That has been made possible by a great care team, dedicated care partner and most important of all, the enhanced therapeutic benefits of HHD with the flexibility of treatment schedule and of course, ability to conduct nocturnal treatments with my short daily treatments.

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          • #6
            Originally posted by rfhopper View Post
            I have polycystic kidneys know about them since I was 26. They have grown to the point that I going to have them remove because I can't hardy breath any more. The smallest one is 12.5 inch long by 8 inch. wide, the other one is13.5 inch. by 8.5 inch. that was in May. Last year they grew 4 inch. a piece, they are probably larger now because my breathing has become more difficult. Will be on dialysis for the rest of my life.

            That SUCKS...but I know where you come from. I too have PKD and my cysts have grown to the point that they cant count them; and now they are killing my back everyday!

            And like you; I will be on Dialysis for the est of my life, unless a donor pops up!

            Good luck...stay strong!
            AV Fistula - Upper Left Arm - 09/09
            Fistula Gram 01/10
            Start Dialysis 05/10
            Fistula Gram 07/10

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