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  • Successes with Work?

    Hi. I am not yet on dialysis, and work part-time and go to school part-time. I have a GFR of 11, and have been on the transplant list for a little over three years. Have had 5 potential live donors, all who were turned down for one reason or another. Oh well. I have PKD.

    My question is, if you work, how do you do it and have any energy for anything else? I worked about 35 hrs last week, in a fairly low stress job in a church nursery with only a few kids. But by Wed my kidneys were very upset, and last night and today I have had a lot of pain and uncomfortableness, some nausea and a bit of edema. This is why I stopped working full time. But, I thought maybe with the lower stress job it would be okay. Not so much. My house is a disaster and I feel like a slug.

    So, if you work, how do you do it? What helps? What doesn't?


  • #2
    Well, I'm at 11% and have PKD as well, but work 40 hrs/week in a manufacturing supervisory position, as well as having an elderly father I need to visit at least twice a week. I find that eating a LOT of high-carb foods helps (luckily, I'm not diabetic), and trying to get enough sleep helps as well. A couple cups of coffee each day is an absolute must, as well. Perhaps my athletic days in my past are what keeps me going. I've lost a lot of muscle mass (6'2", used to weigh 185, now weigh 165), but what remains is probably still pretty strong.


    • #3
      Maybe both of you can help me understand something. I would have thought at a GFR of 11 that you would be on some type dialysis. I guess my question is what criteria is used to determine when you start dialysis? I have been between 18 to 23 GFR over the past year. Is there a specific GFR taht determines when you start dialysis?


      • #4
        My doctor explained that he wanted me to start at GFR 10 because that is what the dialysis machines will keep me at and I would be ready for a transplant if one came available. It also would help me to feel better between treatments. Every case is different. I have PKD with problems keeping red and white blood cells from detraining . I am triing to get a live kidney which three people were rejected for different reason. So I am waiting on a cadaver kidney. I have been told that each person with each different physical reason for being on dialysis changes case to case.


        • #5
          GFR values from blood tests are notoriously inaccurate. A 2h hr. urine output test is the ONLY accurate test, and in my case, it shows my true GFR to be about 5 points higher than my blood test shows. Even so, that puts me just barely above 10 right now....

          FWIW, my nephrologist is more concerned about my potassium levels.


          • #6
            Hello Dean54m,

            GFR, like creatinine and BUN values determined via blood test are highly susceptible to hydration levels and will vary from test to test. Trend in these numbers over time is far more indicative of what is happening to your kidney function. A key study showed that morbidity rates for individuals who started dialysis at GFR's 15 were no better or worse than individuals who started dialysis with GFR's of 6. The patients with GFR's of 6 were able to delay dialysis for that period where their GFR's dropped from 15 to 6.

            There are many factors that will determine the rate of decline - general health, diet, cause of kidney function loss, etc. I began hemodialysis with a GFR of 9 and was physically and mentally in very good health, e.g. no symptoms of ESRD with the exception of my renal function values and anemia. At the rate of kidney function decline I experienced, I probably could have delayed dialysis by 2 to 6 months. The timing to begin HHD training was advantageous as my care partner spouse was off for the summer and available to participate in the HHD training. I was mentally sharp, a necessity for the training regimen. Additionally, a training spot was open in July 2012 and I committed to fill that spot back in May 2012.


            • #7
              I made it 5 years tattooing before I had a cyst burst (ADPKD) during a tattoo.. i settled out of court and closed my shop down .. up until then it was all dieting .. salads saved my life.. i had weight problems before my 2nd renal failure... i noticed that the stones werent as frequent when my Urine ph was correct via diet so i only had to deal with the aches of hunching over.. you can only chug so much water before your kidneys chug back tho lol.. I tried everything to fill the viod.. ultimately it was the depression that shut me down.. I know i didnt have time for my family because if i didnt sleep as soon as i got home i wouldnt get out of bed for 2 days.. my dog and my kids made me get up .. The uncomfortable feeling under my ight ribs is UNBEARABLE .. its worse than the cyst bursting for me.. that constant reminder that its there.. But enough blabbering, Chug water... stretch the moment you get out of bed ( pushings nutrients through your bloodstram early), diet correctly, and the hardest part was taking it easy .. its so easy to get involved and over exert.. hope this helps


              • #8
                My gfr is 27 and I still work full time in the health industry but I am tired constantly. If I don't get at least 10 hours of sleep at night I am doomed. I am not sure how much longer I will be able to maintain full time work. It is a constant struggle.


                • #9
                  At a GFR of 25, I was still working 55 hours a week. If you are reducing your protein intake, you MUST keep carbs handy to get through the day. I snacked about once every 2 hours while working.


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