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Why Am I Not Given Diet Restrictions?

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  • Why Am I Not Given Diet Restrictions?

    I'm a 22 year old female and I was diagnosed with CKD at age 15, but come to find out have had it my entire life. I'm just curious because I've reading about everybody talking about how strict their diet is and how excited they are just to have a spaghetti or pizza or whatever. I'm just curious as to why I've received no diet restrictions. I'm in the evaluation process for a kidney transplant. I've met with the hospital that will perform the surgery and have met my coordinator and surgeon and what not but still I'm not on any diet restrictions? Am I working with poor doctors or is it because I'm so young and still in shape that it's not necessary? I'm just really confused. My GFR is 14 if that helps?
    Diagnosed with CKD at age 15 but had it all my life.

    Just started the transplant evaluation process.

  • #2
    Re: Why Am I Not Given Diet Restrictions?

    Hi Sarah and welcome to the forum. It is really unfortunate that a kidney diet to meet your needs has not been a part of your health care. I am surprised but not shocked because there are too many stories like yours. Even in the earlier stages of ckd diet plays an active role in slowing the progression. I would talk to your Drs. about it. Have you started dialysis yet?

    I wish you the best with your transplant evaluation.

    Toni
    May you always have Love to share, Health to spare, and Friends that care


    Acute Kidney Function Loss 12/07 - GFR 39
    Current GFR 46 - Stage 3 - Controlled HBP

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    • #3
      Re: Why Am I Not Given Diet Restrictions?

      Originally posted by SarahAllison01 View Post
      I'm a 22 year old female and I was diagnosed with CKD at age 15, but come to find out have had it my entire life. I'm just curious because I've reading about everybody talking about how strict their diet is and how excited they are just to have a spaghetti or pizza or whatever. I'm just curious as to why I've received no diet restrictions. I'm in the evaluation process for a kidney transplant. I've met with the hospital that will perform the surgery and have met my coordinator and surgeon and what not but still I'm not on any diet restrictions? Am I working with poor doctors or is it because I'm so young and still in shape that it's not necessary? I'm just really confused. My GFR is 14 if that helps?
      Sarah,

      It sounds like your medical team is not doing all of their job. They should be speaking with you about not only transplant, but also different dialysis options. With this includes a visit with a dietition to help go over good and bad foods for those with kidney disease.
      I would definitely bring this up. Do you have a general doctor or a nephrologist?

      I would even ask why this was not talked about with you.......

      //m3riddler
      ______________________________
      PD - 13 Years
      3 Transplants
      In-Center Hemo - 6 Months
      NxStage - Since April - 06
      Facebook: Dialysis Discussion Uncensored

      ________________________________

      Comment


      • #4
        Re: Why Am I Not Given Diet Restrictions?

        My nephrologist has said nothing about diet restrictions until my potassium was 5.1.. gave me medication to get rid of the potassium (which was horrible) and then told me to watch my potassium and gave me a piece of paper that listed all the high potassium foods and that's it. I'm only now asking because I just went to the University of Wisconsin for my evaluation and that's when I met with a dietician and she stressed how important it was that I follow these guidelines. It's like.. why am I just now being told this. I mean I understood that I have to eat healthy but I had no idea what my restrictions were until I met with her. My nephrologist told me he didn't want me to have to go through dialysis and wanted to start the transplant first to avoid it if we could. I mean I feel like crap, tired constantly but I don't have a tin taste in my mouth or anything like that.. Just tired. I don't know if I'm resilient because I am 22 or if a GFR of 14 is still enough to avoid dialysis. I'm just confused about everything and I'm just starting to realize I have kidney disease and it's hitting me really fast. I've known for awhile but it's just something that's been there and never acted up until recently.
        Diagnosed with CKD at age 15 but had it all my life.

        Just started the transplant evaluation process.

        Comment


        • #5
          Re: Why Am I Not Given Diet Restrictions?

          Originally posted by SarahAllison01 View Post
          I'm a 22 year old female and I was diagnosed with CKD at age 15, but come to find out have had it my entire life. I'm just curious because I've reading about everybody talking about how strict their diet is and how excited they are just to have a spaghetti or pizza or whatever. I'm just curious as to why I've received no diet restrictions. I'm in the evaluation process for a kidney transplant. I've met with the hospital that will perform the surgery and have met my coordinator and surgeon and what not but still I'm not on any diet restrictions? Am I working with poor doctors or is it because I'm so young and still in shape that it's not necessary? I'm just really confused. My GFR is 14 if that helps?
          Sarah, i can't believe that all this hasn't changed, especially with the GFR and stages of CKD, which wasn't apparent, when i was diagnosed with ESRD, no early stage monitoring whatsoever in 1990. And as i know the scenarios around how a pt. is monitored to help in prolonging or even reverse the progression in some cases, i didn't think that this very day, it is still being followed the way it was a few decades ago. Go Figure! Every neph is different. And as far as a diet is concerned, you should be on some diet restriction, because the purpose for early detection of CKD, is to take preventive measures in prolonging the disease for as long as possible, and that would include medication as well as diet. But did you know that taking any kind of pain killers can increase the progression of CKD? That is why it is your right as a patient, to get a second opinion, if you have any doubts about your care with CKD.
          Glo

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          • #6
            Re: Why Am I Not Given Diet Restrictions?

            I don't really know anything about CKD. Everything I do know I've researched myself. Joining this forum has opened my eyes and I've realized that I've not been educated on anything. My parathyroid is high and he's given me calcitirol.. Vitamin D. I had no idea why my parathyroid was high.. what it did and why I was given Vitamin D. He never explained it to me. It's like he tackles problems as they arise instead of attempting to prevent or prolong the inevitable. So confused.
            Diagnosed with CKD at age 15 but had it all my life.

            Just started the transplant evaluation process.

            Comment


            • #7
              Re: Why Am I Not Given Diet Restrictions?

              You should have a dietician onboard as part of your health team. It really is amazing the low level of importance they seem to have put on your diet, when really it's anything but. The bottom line is always the fact that nobody can look after you, like you can. (in regards to seeking the proper advice & treatment) I'd recommend altering your diet to acknowledge the state of your kidney function, allowing them to work as well as they can for as long as they can, without intervention of the dialysis/surgery type.

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              • #8
                Re: Why Am I Not Given Diet Restrictions?

                Hey,

                I'm 22 and am being assessed for living transplant/going on dialysis soon as well and haven't really been given any restrictions either! Have been told to lower sodium intake and stop eating foods high in phosphorus which I'm also on binders for.

                They also want me to lower my calorie intake. All good advice & my phosphorus has come down but I've not really stopped myself from eating anything so don't feel restricted!!

                Comment


                • #9
                  Re: Why Am I Not Given Diet Restrictions?

                  Originally posted by SarahAllison01 View Post
                  I don't really know anything about CKD. Everything I do know I've researched myself. Joining this forum has opened my eyes and I've realized that I've not been educated on anything. My parathyroid is high and he's given me calcitirol.. Vitamin D. I had no idea why my parathyroid was high.. what it did and why I was given Vitamin D. He never explained it to me. It's like he tackles problems as they arise instead of attempting to prevent or prolong the inevitable. So confused.
                  Sarah,

                  Unfortunately, it is too often where the medical teams do not practice informed consent and speak with you about all of your options available.
                  This is why it is ever so important that you do your own research. You should be involved as much as possible with your condition and just not leave everything up to the docs to tell you to do. You shouuld learn, ask questions and if something doesnt seem right, question your medical team. A good medical staff will encourage any questions you have.
                  Information is power.....

                  ///M3R
                  ______________________________
                  PD - 13 Years
                  3 Transplants
                  In-Center Hemo - 6 Months
                  NxStage - Since April - 06
                  Facebook: Dialysis Discussion Uncensored

                  ________________________________

                  Comment


                  • #10
                    Re: Why Am I Not Given Diet Restrictions?

                    Wow, sounds like my Dr's!! I have not been given any restrictions either. I go to the Uof M in MN, I still don't know any more than when I was first diagnosed.

                    So I don't know what can be done about this disease. I feel helpless, like there is nothing I can do but to let this go on. All I know about diet is to stay away from salt. There has to be a better way, c'mon Dr's its 2011 medicine has to been improved since the
                    1900's. Why don't they inform their patience better, specially when health care is so expensive.

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                    • #11
                      Re: Why Am I Not Given Diet Restrictions?

                      Originally posted by Mini American Eskimo's View Post
                      Wow, sounds like my Dr's!! I have not been given any restrictions either. I go to the Uof M in MN, I still don't know any more than when I was first diagnosed.

                      So I don't know what can be done about this disease. I feel helpless, like there is nothing I can do but to let this go on. All I know about diet is to stay away from salt. There has to be a better way, c'mon Dr's its 2011 medicine has to been improved since the
                      1900's. Why don't they inform their patience better, specially when health care is so expensive.
                      Mini American Eskimo's

                      Your right, we should be infomred more, but......It is also up to the patient to educate themselves and learn as much as you can. Dont solely rely on your medical staff to teach and tell you everything as it will not always happen.

                      ///M3R
                      ______________________________
                      PD - 13 Years
                      3 Transplants
                      In-Center Hemo - 6 Months
                      NxStage - Since April - 06
                      Facebook: Dialysis Discussion Uncensored

                      ________________________________

                      Comment


                      • #12
                        Re: Why Am I Not Given Diet Restrictions?

                        I am not sure why docs today are still not getting information out to their patients. It is 2011 and we have many more resources available than any other time in history. As a patient, it is our responsibility to learn as much as we can about our illnnesses. The doc is not totally responsible to do everything for us. Not that I am taking their side. If we do not know where to go for information we can always ask. If you are logged into this site you've already taken a first step.

                        The internet is a wonderful invention for information. Type in kidney disease and many many pages will return. Type in potassium or phosphorous with dialysis patient and more sites will be revealed. But remember Davita has done a lot of the sorting for us. If you don;t understand what you've read you are not alone. Medical terminology is like a new language. Do not be embarrased if you don't understand.

                        We are here to help one another.
                        Best of luck on each and everyone's journey.

                        Ladybug14

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                        • #13
                          Re: Why Am I Not Given Diet Restrictions?

                          Thanks, I'll do more research. I have many questions that remain unanswered. This site is a treasure of information, glad I found you guys!
                          Have a great night
                          Mini

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                          • #14
                            Re: Why Am I Not Given Diet Restrictions?

                            I love the support you give to each other. Thank you for acknowledging the valuable resources here at DaVita.com. There are articles, videos, recipes and a diet blog in addition to this discussion forum.

                            As a nutrition professional, I know how frustrating it can be to get quality diet information. Unfortunately, because we don't have each individual's personal health history and other medical information, we can't give individual, specific feedback.

                            But in general, as you're read throughout this forum, you can prolong the need for dialysis by preserving remaining kidney function through diet and other care (controlling blood pressure/blood sugar, avoiding certain medications, etc)...

                            Keep in mind that your kidneys are a major organ with multiple roles in maintaining our bodies in a healthy state.... they excrete excess fluid and by-products of food metabolism, they play a role in preventing anemia, and they play a role in maintaining the balance of calcium and phosphorus (through the hormone excreted by the parathyroid gland). It's really a complex organ that helps maintain the normal balance of our internal environment (homeostasis).

                            Continue to read and learn, and do what you can to stay in the best health that you can... and once dialysis begins for those who need it, you'll continue to learn more and more!

                            Best wishes to all.
                            ------------------------------------------------------
                            The response of this moderator is not an attempt to address a specific condition. Please note that the DaVita.com discussion forums do not provide medical advice or professional opinions about specific conditions. The purpose of the discussion forums is to provide an opportunity for individuals to discuss end stage renal disease and related topics. The discussion forms are not a substitute for professional medical care. For questions or

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                            • #15
                              Re: Why Am I Not Given Diet Restrictions?

                              Originally posted by Mini American Eskimo's View Post
                              Wow, sounds like my Dr's!! I have not been given any restrictions either. I go to the Uof M in MN, I still don't know any more than when I was first diagnosed.

                              So I don't know what can be done about this disease. I feel helpless, like there is nothing I can do but to let this go on. All I know about diet is to stay away from salt. There has to be a better way, c'mon Dr's its 2011 medicine has to been improved since the
                              1900's. Why don't they inform their patience better, specially when health care is so expensive.
                              Unfortunately, too m,any doctors don't give us all the info we need to give ourselves the optimal chance for better health and life. That is why it is so important to get informed- read, research and above all, ask questions! Don't let a doctor rush you out of the room without answering ALL your questions. Make a list before you go to the doctor. That will help you remember , too. If your doctor does not take the time to answer your questions-- consider getting a new doctor!

                              God Bless~

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