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In A Tough Spot With Diet...Would Love Feedback from Professional/ Fellow Sufferer!

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  • In A Tough Spot With Diet...Would Love Feedback from Professional/ Fellow Sufferer!

    Hi,

    I am bordering stage 5 CKD, with a GFR ~16. As we all know, the pre-dialysis diet is hell in a handbasket, but due to another health problem, this diet has just created a new nightmare for me.

    I just had an upper endoscopy, for multiple stomach problems that I have been having recently and unable to swallow solid/ dry foods. Due to their findings of an esophagus burn, gastritis in stomach, and hiatal hernia, they say that I need to stay away from simple carbs/ sugar/ dairy, etc. Well, that would be fine, but simple carbs are about all I can have from a kidney standpoint, so I really don't know what I can eat to avoid being double over in pain, yet not causing faster progression of my kidney disease. I need to spare my kidneys for as long as possible, because I am not a TX candidate, nor a hemodialysis candidate either (bad vessels).

    I would really appreciate feedback from any renal RD, as my insurance will not cover me consulting with one, until I am on dialysis. That is so stupid anyway, why not cover it before, to try to prolong kidney function and save themselves a bunch of money in dialysis costs? Oh well, that's another thread altogether. If anyone else is in the same boat and has been able to manage, please share with me, as I am just at a complete loss.

  • #2
    Are you on Nexium, which helps heart burn heals the esophagus? Because I don't digest food well, I am on a generic form of that. That would help with the esophagus and burning. Also when I had trouble with acid reflex because I could not digest meat, my husband cut the legs off the foot of the bed two inches so that I sleep elevated. That also helps because I don't have the reflex at night. With those two things, I have been able to stay on the kidney diet. I eat only about 2 oz of meat a day, it that. That also helps because the stomach doesn't have to work as hard. I have played around with food for many years. You are to stay away from dairy anyways on the renal diet. I have given up sugar but do treat myself a few times a week with cookies, cake or pies. I just don't eat them very much anymore and it is on a very good day. Sick days, I eat a lot of soups and cereal. I am at 16% too. I hope this helps. You must be under 65 and not on Medicare. Medicare helps pay for the dietician and so much more. If you are in stage 5 (15%) you should apply for Medicare because it takes care of people in renal failure. You would have access to counseling. Hope this helps a little.

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    • #3
      Don't forget that you can still consume fats!

      Comment


      • #4
        I wrote a general article about this on my blog sometime ago. It might not be as specific as what a dietitian would tell you, but let me just post a link:

        http://www.kidneydoctorbradenton.org...y-disease.html

        Comment


        • #5
          Greetings to all; first, it took a some dialog with DaVita's tech person to finally be able to post. I'm hoping this post will go through. Second, I am puzzled as to why there have been only 4 responses to this thread and, as far as I can tell, not one response from DaVita's dietary specialist. It concerns me because I am under the impression that this is more or less the 'Cadillac' of web sites regarding kidney disease and the issues surrounding it. That being said, my gratitude to kidneydoctorbradenton for the immensely helpful website.. I went there and received a better understanding of what I can do and I love the way he explains...you are welcome to have supper with me anytime, Doc.

          I am not a diabetic (yet). My left kidney is now a husk of uselessness due to renal artery stenosis brought on by severe atherosclerosis. This condition has left my lower arteries in varying degrees of blockage. In 2006 I required a colectomy of my transverse colon because of complete mesenteric artery occlusion. A section of that part of my intestine was necrotic. They found the renal artery blockage at the same time and it was suggested that nothing be done because of the already present severe hypertension. I think something ought to have been done, now that I'm a little wiser regarding kidney disease. But, at the time, I was too sick to care about 'what ifs.'

          Now, at diagnosed Stage 3 kidney disease, (referring to my right kidney), My physical life revolves around food plans. I sense deeply that I need to approach my kidney disease AS IF I am diabetic. Deep reductions in processed/refined foods is required to help reduce the overloading of plaque in my arteries, yet every kidney diet I have researched tells me that refined products are ok-- especially refined sugars which do nothing but aggravate already inflamed arteries causing even more blockage. ie; white breads, and other refined flour products.

          If there were a hospital based dietician available in my area I would utilize that person. Unfortunately, the one we had is no longer in service. Traveling 200 miles to the next one is not feasible for me. I was hoping that this area of the forum could help me. lruff, I hear what you are saying. I am not looking for quick fixes, either. I am hoping for feedback from people with co- morbidity issues who are required to balance different dietary issues on one plate, so to speak.

          I look forward to suggestions from all of you. Thanks for being here for me. LoisJean. (pearlygirl)

          Comment


          • #6
            I have PKD which is different from diabetic kidney's. Instead of dying, mine are full of cysts closing off normal use. As they get bigger the other organs in my body feel the pressure causing pressure on spine, stomach and intestines. I went to a hospital for my training which was ordered by the family doctor. I had already figured out to get rid of sweets, potatoes and chocolates. I also was not using any salt to cook order by the doctor in stage 3. I am in stage 5 at 13 GFR and have slowly gone down in the last four years from stage 3. My kidney doctor ordered lots of water so I don't get dehydrated. He told me to cut down on red meat. On my own, I have established to eat only 1 oz of red meat if that each day. I do eat about 2-3 oz of fish or chicken although that is starting to taste funny now too. At the time I went to dietician she was pleased I had already figured this out on my own. She said that she usually only gave council to diabetic patience because the kidney doctors do not know as much about PKD dieting. It is the same. Less protein especially red and drink lots of water. Each mostly fruit and veggies with no additives. If it doesn't grow in the garden or tree, don't eat basically was her advice and eat yogurt. Eggs are ok too but no milk products. I hope this helps you. It helped me to know I was doing the right think. Eating out is the hardest thing when I go on vacation. I am not on dialysis yet although I have a fistula.
            May God bless you. Pray others will give you what they have been taught too. This stretched out my decline of kidney function and my doctor is very pleased about that.

            Comment


            • #7
              pearly girl=another site with a support person is found on FB https://www.facebook.com/dori.schatell This site is from the TOPs nurse support I was given and who will help me when I start dialysis.

              Comment


              • #8
                Originally posted by kcramer View Post
                Are you on Nexium, which helps heart burn heals the esophagus? Because I don't digest food well, I am on a generic form of that. That would help with the esophagus and burning. Also when I had trouble with acid reflex because I could not digest meat, my husband cut the legs off the foot of the bed two inches so that I sleep elevated. That also helps because I don't have the reflex at night. With those two things, I have been able to stay on the kidney diet. I eat only about 2 oz of meat a day, it that. That also helps because the stomach doesn't have to work as hard. I have played around with food for many years. You are to stay away from dairy anyways on the renal diet. I have given up sugar but do treat myself a few times a week with cookies, cake or pies. I just don't eat them very much anymore and it is on a very good day. Sick days, I eat a lot of soups and cereal. I am at 16% too. I hope this helps. You must be under 65 and not on Medicare. Medicare helps pay for the dietician and so much more. If you are in stage 5 (15%) you should apply for Medicare because it takes care of people in renal failure. You would have access to counseling. Hope this helps a little.
                KCrammer: My GFR went below 15 for the first time since my diagnosis. I am not 65 or old yet, but I gather from what you just wrote, I can start the Medicare process even though my nephrologist has not ordered that I go on dialysis? If you will clarify this for me, it will be much appreciated.

                AND, what kind of cereal are you eating? My nephrologist warned me about cereals found in grocery stores (too much phosphorus). I am wondering what cereal you found that fits well into a CKD4 diet? Do you use Almond Milk or what over the cereal? Thanks for your help!

                Marcia

                Comment


                • #9
                  K..thank you so much for your response. I have reduced my protein intake...no red meat; baked chicken makes up most of my main meal basically because it's about the only meat that still tastes okay. The nephrologist wanted me to limit my fluid intake to 28 ounces a day, but I became too dehydrated and so increased it to 38 ounces and feel better. 6 months ago my GFR was 34, last week it had improved to 36. Thank you, too, for the Facebook reference. It looks like I'll be using Davita and other resources for dietary info since my hospital still has no dietician. So far I have been able to put together a fairly good food plan and since I'm the only one who has to suffer my cooking, I don't have to get too particular about what I put on the table, only what's in it. I prefer whole grain foods, but have cut down on them...still can't bring myself to eat refined flour products.

                  Thanks, too, for your blessings. I am so grateful to you and others who have been so helpful...without your personal experiences and support I would indeed find myself at a loss. Please continue to share.

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                  • #10
                    hello, i am new to the site but have been on diealyses for two years now. three times a week for four and a half hours! *sights* the diet is what kills me. not so much the fluid intake but what you can and cannot eat. my bigest challenge is snacking. i love to snack, but what can you snack on? attached to this challenge is my over indulgence. i cannot control how much i put n my mouth. so, for example munching on one bag of popcorn turns into three big fat *** bags! eating one apple turns into three or four! so, is there some food we can eat without paying attention to portions? what snacks do you recommend for a diebedic, blind, poor clearance cause of the fistula, border potasium and high phosphate but other wise ok numbers depressed guy living alone with my seeing eye dog, *sights* ; foodsnacks? feel free to drop me a private line or three?! he he he

                    Comment


                    • #11
                      Blood purification is a group of treatments which focuses on cleaning the blood. When kidneys damage develops into kidney failure stage, there are more than 90 types of toxins in the blood. Blood purification can remove all kinds of waste products in kidney disease patients. It contains the treatments of hemodialysis, hemofiltration, hemoperfusion, plasma exchange, CRRT, immunoadsorption. Based on your condition, the doctor will choose the treatments to clean your blood.

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                      • #12
                        I have been able to stay on the kidney diet. I eat only about 2 oz of meat a day, it that. That also helps because the stomach doesn't have to work as hard. I have played around with food for many years. Washington DC Commercial Kitchen Cleanings

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