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What is your current management plan for CKD?

Everyone's management plan for chronic kidney disease may look different. There may be a combination of medication, dialysis, transplant, diet, exercise, and more. How are you currently managing your CKD? Please chime in and share!

  1. I have had a kidney transplant for three years and just celebrated it on the 3rd of this month! I’m on a lot of different medications for it from anti-rejection drugs to steroids, two different blood pressure, and more. It’s a blessing being able to have a health transplant, of course, there’s food I have to avoid because of the medication but it’s not a big issue as it’s something I can live without like Shushi it’s all worth it in the end lol.






    Thank you, Sabad (Team Member)

    1. This is my complaint as well. In fact, they never even suggested I see a specialist, or tell me what to eat or not eat. Nothing! I'm Stage 3!

    2. While we can't do much about doctors being their usual nincompoop selves, ha ha, we can at least point you to an article about some of our community members diets with CKD! https://chronic-kidney-disease.net/living/role-diet-nutrition Hopefully it will give you a place to start - let us know if there's anything else we can do! Keep on keepin' on, DPM

  2. Plan?? What plan???? I get labs done twice a year and go to the specialist twice a year to hear my results of my labs. I would think there would be more involved with such a serious condition. No advice or direction on what to avoid or not avoid. No direction on what to eat or not to eat. I am lost.

    1. Exactly the same for me! I also have prostate cancer and MDS. I stopped the ADT hoping to lessen my fatigue. It has helped a bit, but know I'm sure now that my CKD is causing a lot of it.

    2. Hi all you CKD ‘No Plans’..
      Ditto for me as well..
      My eGFR keeps waffling closer to normal = 90,
      then slides back down to 40, 50!,
      And my Primary Care Doc says my numbers ‘overall’ from lab work are ‘STABLE’ how can that be? 🧐 Stabling down!!
      Just needed/wanted to check in to let you know, y’all are 💯
      N O T A L O N E!!

      Our medical system has gone 💯downhill, which makes me fearful at times, with the many various ‘SPECIALISTS’ I have met in the past 4 years..
      I am at stage 3, and just found out I have Stage 1 Upper Lung Cancer, with zero Symptoms, and no mestatation( is that even a word?) 🤔
      In other words, no other part of my body ‘lit up’ when I had a PET Scan.. which is good..

      I am increasingly grateful for the Doctor I have as she Specializes in Gerontology… Ya Ya I am an elder = 73!..
      She is incredibly humbly intelligent, with such a soft and kind nurturing manner..
      When I turned 70, COPD came to stay, and I had yet to ‘accept’ that I was not just ‘getting’ older … but WAS older!!
      Then CKD came to stay, when the MD who was treating an ‘unhealing’ ankle wound, noticed my edema, and sent me for labs and urine STAT!!
      TADA = CKD
      That wound finally healed .. once I had stopped 🚬 🚬 , which the Wound Doctor said it would..
      Then, a bout with Pneumonia/COVID/MRSA/ “plus my second COPD EXACERBATION all at the same time, quite obviously 🙄 landing me in the hospital for close to TWO weeks, until I was cleared from COVID!!
      Man oh Man, was this woman sick 😷 !!
      Then a Podiatrist cut a hole in the bottom of my foot .. close to the back edge instead of trimmings my little toenails..
      Long story ..
      However, I am back at the Wound Clinic, my foot wound is.. s l o w l y
      healing, and I just completed a round of 5 individual
      ‘Direct Focused Radiation’ Treatments, to ZZZAAPPP this one teeny cancerous nodule in my lung to kingdom come (sp)..
      They..HA HA .. said tiredness would be my major side effect, as this type of treatment keeps working AFTER each Zapping period, however…NOT with just the tiredness..
      The aches and pains, muscle spasms at nite, no appetite, etc., can be added on to that single ‘tired’ side effect..
      And… So it goes!!
      I pray this is the final ‘diagnosis’, for ..mEver??
      Or at least, so that I can enjoy 😊 the few WARM/WARMER months we have here in M A I N E!! April thru mid October..Which I truly have NOT gotten to enjoy now for the past few years..

      One day at a time works for me,
      with ACCEPTANCE mixed in there with
      NO Expectations ..
      Helps me feel some Gratitude 🙏
      And receive some JOY 🥰😇😎🤓☺️
      in this simple daily life I was given,
      to give to others some of life’s joys as well..

      Be Well..
      Stay Well..

      Best,
      Gabby
      Maine

  3. I am not impressed with having stage 5 and need hemodialysis. I have had a fistula that never worked and had a graft that is not much better I have had 7 sessions of hemodialysis with 4 success and 3 infiltrated 1 trip to access clinic to have graft unclogged. It is not looking too positive I am being trained to do home hemodialysis 5x a week but I don't see an up side I Pray it will get better. Thanks for allowing me to vent I have had 4 knee revisions with multiple bouts of MRSA and finally finished that but my kidneys paid the price of vancomycin I worry about having brittle bones and long stems in both knees .Thanks Hudson Carlton

    1. Hey Herb, Thanks for sharing your support. You also are going through a lot! It's nice that you have your wife by your side as you endure the dialysis. Take care of yourself and know that we are here for support should you need it. Sending healing thoughts. - Kat (Team Member)

    2. Sorry to read you are having such a hard time. I am curious as to your age. I had previously posted a report about a study done at a US verterans hospital which showed that for on average for men over 65 those who had dialysis lived just 9 days longer than those who did not. I am at stage 4 and at age 86 have decided that I will not go for dialysis. The whole process seems to me to be bloody awful not to mention the tedium of all the messing around with either dialysis three times a week or hemodialysis.

  4. I monitor my protein, phosphorus, potassium and sodium intake as well as water intake. Hope it's working!

    1. That is quite a lot to monitor! I try to monitor my food intake on my own chronic illness journey so I use an app on my phone that basically reads the barcode of the foods and then breaks down all the ingredients and calories for me. It is pretty useful, I won't lie and now I'm in the habit of using it everyday. It might be worth checking out an app like that! If you need help let us know. Keep on keepin' on, DPM

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