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Help caring for someone with stage 4CKD

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  • Help caring for someone with stage 4CKD

    I am new here, My first post actually. I am caring for my 30 year old husband who is in stage 4 CKD with a GFR of 22%. Some background information on him is that he only has one kidney because of a Wilms Tumor at age 9 months that required his right kidney to be removed and cancer treatments. He just recently hit stage 4 and for some reason his kidney is failing quickly. We are both having a difficult time emotionally with this and I am wondering what you have done to help your family member or friend to cope with this disease and preparing for a transplant/dialysis. I'd like to know if you are dealing with CKD what the most helpful thing someone told you or did for you that made a difference in how your thought about CKD or helped you fight through it. We are Christians so bible verses are welcome
    Thanks in advance

  • #2
    Hi, I am caring for my Dad who also has stage 4 CKD. We are in the middle of testing for a transplant. It is emotionally difficult but I do pray throughout the day. What I'm doing is managing his food intake because you can slow down the disease by having him eat the correct foods. Unfortunately, the doctor did not tell me this but I found that out through my research. I have managed to put together meals that he enjoys. I wish you and your husband well in your journey. Do not give up and keep believing in miracles.


    • #3
      Thank you! I have been printing recipies daily for him, we are enjoying this new cooking together. However, we found yesterday he is now 16%. I do not understand why his doctor still refuses to give us a referral to the transplant center. We are seeing another doctor Wednesday and are praying we get different news regarding that.


      • #4
        Hello Kmendenhall. I am so sorry you are going through all of this! CKD is a scary thing to get. Did you know that there are all kids of recipes on this page up above that you can follow? They are delicious; it's the only thing I eat now is choices from the recipes. I have my faith In God to help me through this and I pray a great deal during the day. Matter-of-fact I think I almost have a running conversation with Him all day. I am in stage 4 but not on dialysis yet. My GFR is 25. I'm hoping it stays that way for a long long time, but if I need dialysis, so be it. I'm ready for it. Mr. nephrologist hasn't even mentioned a transplant to me because there are too many other things wrong with me. That's fine with me, let the healthier ones like your husband have the good kidneys. I will pray that you get some answers when you see your new doctor, and please keep us posted on how you are doing.


        • #5
          how to know if i have a stage 4 kidney probelem?thank's in advance


          • #6

            your Dr should be able to tell you if you have CKD. If you have your lab report it should also state what your gfr is at this time. It depends on what your gfr is what stage you are in. If you don't have your lab report go to the lab where you have them done and ask them for a hard copy of your full lab report. That's a quicker way instead of waiting to go to your Dr in order to find out. Hope that answers your question. Do you know your gfr?


            • #7
              My advice would be to get as much work done as you can before he is on dialysis.
              For example: contact a good transplant center and do all the tests and paperwork. It’s a lot of work and not something you want to deal with once he starts dialysis.
              Also, if you’re thinking hemo dialysis is right for you, get the fistula surgery ASAP. It takes at least 6 weeks to mature and it’s great to avoid the chest catheter if possible.

              Travel will be more restrictive, especially internationally - most insurance will not pay for treatment outside the US. So travel now if you have a special trip that you were hoping to take in the near future.

              Food is challenging. Make gradual adjustments to seasoning to avoid him feeling like nothing tastes right. Same with things like milk. It’s hard to switch from dairy to almond milk - but if you do a 50/50 mix for a week and then just up the almond milk gradually, you won’t taste the difference so much.

              And don’t be scared. Dialysis is not so bad.


              • #8

                In order for you to know if you are diagnosed with CKD Stage 4, you need to ask your Primary Care Physician (PCP) to do lab work , including checking your urine for abnormalities. IF in the event, there are abnormalities in your urine test as well as your other lab tests. You should ask your PCP if you can be referred to a nephrologist as soon as possible. Keep in mind - lab tests will take about a week to finish, so check back with the doctor's office if they are done and if you can receive a copy of the lab results to bring to the nephrologist for them to take a look at it.


                • #9
                  husband is age 79, with ckd 4...GFR of 16...he has energy, and eats, well, had turp surgery, since, then, he uses, catheters, at home, but, is able to go, on his own....why does his kidney specialist, keep pushing dialysis?.......Last year, he was an 8 GFR almost died, and no talk, then, about dialysis, he got a blood transfusion, then, and since then, he had turp surgery, on blockage in I mentioned, he does eat, I cook mostly, without salt, low phosphorous.....Is it possible? that he would maintain, and never need dialysis?........we are optimistic type people, his urologist is optimistic as was his last it best, to keep hopeful?


                  • #10
                    Hello all!! I am very new to this. I have now taken on caring for my 75 year old father with no idea what is involved with CKD and not a lot of information on his case except he is in stage 4 and doing well according to him. He has told me his doctor said he's doing so well that he doesn't need another appointment for a year🤔 should I be worried? Also what is gfr?


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