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What do you wish that someone would have told you when you were first diagnosed with CKD?

I wish I had been told that I needed to watch what I eat and drink at the beginning of this journey. I wasn't told that taking care of this at the present moment would slow down damage to the kidneys. It was over a year later that this was brought up. At this point, my doctor did help me find a dietitian. She was able to help me with planning meals and snacks that I would want to eat.

Is there something your healthcare team left out that you wish they had told you upfront?

  1. For me it was their demure and behaviour it wasn’t comforting at all, I was numb to it all and the lack of information they gave me was even harder as I had to manage and research and ask questions. Definitely think I would have been better with a more comforting approach and more explain ing about ckd and what I would have been facing.

    1. Hello , I absolutely agree with you. It does feel like they have a lackadaisical approach to CKD. So much is left out and not told to you at the moment. I had no idea what to do when I got a diagnosis. Thanks for sharing.

      1. Your article I just read was really good. Everything you said I could relate too. Thanks for sharing. I think I am your clone. 😀

      2. Hello , Thank you so much for the kind words. It is a hard road to travel. My youngest son is on stage 5. He never complains and always has a smile on his face and he has 3 children.

        , isn't it crazy how much so many of us are on the same journey? We need to continue to let our voices be heard so that the next generation doesn't have to go through this. I am so sorry that you are going through this. Just hang in there and remember we are here if you need us. Diane (Team Member)

    2. All I was told by the Nephrologist is to avoid salt. She did not mention amounts of protein, phosphorus or sodium limit that I should adhere to. No mention of finding a Renal Dietician. Now I call my new Nephrologist if I need to take an over the counter allergy medicine and others. I found several excellent renal care and diet books on Amazon and am educating myself.

      1. doing pretty good. My favorite doctor is in another office now so I’m seeing the prior doctor. I recently was started on Gabapentin for neuropathy and I called the Nephrologist to see if it was safe to take. She said yes. I am having lab work next week so I’m hoping my numbers for kidney function are stable. I’m taking 4 different blood pressure meds. I check my BP at home and keep a log and take it to the appointments. I appreciate your concern and I find this forum very helpful.

      2. Hello, Thank you so much for replying, and happy to have you as part of this community. My father also takes 4 100mg of Gabapentin a day and 4 blood pressure medications. He is just hardheaded. He is 90 today. I guess he has lived that long, he is doing something right. Let us know how your doctor's appointment goes. Diane (Team Member)

    3. Hello , I wasn't told anything either at the beginning of this journey. Good for you for being your own best advocate. We have to educate ourselves. Thanks for sharing.

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