Confused About Diet for Stage 3 or 4 Chronic Kidney Disease (CKD)

Posted by wietop @wietop, Dec 13, 2017

I was diagnosed with Stage 3 CKD four years ago, but my doctor didn’t tell me. When he retired and I had to find a new doctor is when I found out. I’m new to this and completely confused when it comes to diet. I am currently eating a sandwich for lunch, made with Ezekiel Low-Sodium bread, which is sprouted whole grain bread. In my research I have found some sites that say never eat whole grain bread, while others say you can eat it with no problem. My doctor has told me I don’t need to change my diet, but, as you can imagine, my trust factor is pretty low right now. I’m trying to find some solid information about which breads I should avoid and which ones are okay.

@cldmeyers

I had the same experience as you, feisty76. I'm wondering if thats the norm til one gets to the top of stage 3, using the diet suggestions, I've caused the numbers to drop, although I'm still in stage 3. Drink lots of water.

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@cidmeyers, Unfortunately, I'm learning and hearing from others that far to many U.S. physicians wait until chronic conditions get to a real tipping point before informing patients of "moderate" conditions or referring them to specialists. Also I've learned that our docs spend almost no training time learning about the positive impact appropriate diets can have on maintaining and even improving our labs and conditions. I've been able to improve my GFR scores also and returned my pre-diabetes diagnosis to a whopping A1c of 5 which is normal with with my own research, support in the kidney group, diet and exercise. For others relatively new to the CKD dianosis, I hope together we can continue to support one another, share our "success stories" and work at living the best lives possible. I'm nearly a year in Aug. in my CKD diagnosis, Cid, have you been at this longer? Yes, a lot of water is good unless in dialysis or maybe other complications. What else have you found that has really helped you?

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@paiva

Hello to all members, moderators, and mentors. I was informed by my new PCP that I have stage 3 CKD. I don't have diabetes or high blood pressure. I went back to 2007 to see my lab tests and discovered that after all this time and 4 doctors, finally I am told that I have CKD! I am disappointed with the doctors. My new CKD did not send me to a kidney specialist or nutritionist. After my first shock, I started researching if I needed to change my diet. I saw I should eliminate bananas, oranges, tomatoes, beans, etc. My last 2 lab tests have been normal. I insisted with the doctor that I should see a nutritionist, so she gave me a referral. And then the pandemic happened. I will call the nutritionist to see if I can talk to someone.
However, I want to say that this discussion has been very helpful to me. I want to say thank you all, especially Kamama94 for all her input and book.
To all, I wish good health, be safe, think positively, and take good care of yourselves. Eliana

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@paiva I always like hearing that members feel the information they read here is helpful. Each one of us is unique, and we offer such great support to each other! I am in stage 3b, and holding steady with a eGFR about 34%. Diet and lifestyle choices play a major part in keeping us as healthy as possible, and yep, @kamama94 has done a lot of work to give us guidelines.

Here is Mayo clinic's information on Chronic Kidney Disease https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/symptoms-causes/syc-20354521 As you can see, there are varying causes and risk factors. My disease is caused by an ultra rare autoimmune kidney disorder.

We look forward to hearing how the renal dietician guides you. Other sources for information include rsnhope.org and davita.com
Will you check back with us?
Ginger

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@fiesty76

@paiva, Hello and welcome to this forum. Your story sounds just like mine!

I was thunderstruck when diagnosed with stage 3 CKD. Also realized later that my kidney had shown GFR damage much earlier but never told. Had to insist on a nephrologist referral and then make 4 requests to pcp and neph. before finally getting a doc referral to nutritionist. That guy was terrific.

Did you feel panic like I did initially with the diagnosis? The Mayo group has been my salvation for getting over the initial fear. Now I know steps to take to better manage my condition.

Like you, I appreciate this kidney group so very much. So many excellent suggestions and links and personal experiences that have helped me on this new journey. Really hoping you can visit and receive diet plan help based on your lab values.

@kamama94 has provided such good input and I have tried many of her recipes, too. Also Devita.com is a source to explore if you haven't already. Are you using your lab results to help guide you with your meal planning?

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Dear fiesty76, thank you for your message. Yes, like you, I immediately panicked, as the doctor told me the news at the end of our visit and left me totally in the air. "What does stage 3 mean? When did I pass stage 1 or 2? What do I do now? Should I take medicine for it? Do I have to look into a specific diet? When is my next lab test? Is it deadly? Do I have to go through dialyze? " I thought of all those questions when I got home and could think more clearly. Later I have told the doctor that she scared me. I hope she does not do it to other people. My last 2 lab tests have been normal. But to think that since 2007 it was not normal, that was very scary. I am 73 yrs old and was following the DASH diet as I have genetic high cholesterol and osteopenia. I ate a lot of fiber, never white bread or rice, lots of water, fruits and vegetable, and most chicken and fish. I thought I was taking good care of my body. I looked at the site of the National Kidney Foundation and the American Association of Kidney Patients. That is when I really panicked, as most of the foods I was eating were bad for the kidneys. It took me a while to come down and see what I could eliminate easily. I wish no one in this world should panic as I did. Next week I am going to call the nutritionist's office and see how we can arrange to have a visit with her/him. Thank you for your support. It is good to not feel alone. Have a pleasant day, Eliana

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@paiva

Dear fiesty76, thank you for your message. Yes, like you, I immediately panicked, as the doctor told me the news at the end of our visit and left me totally in the air. "What does stage 3 mean? When did I pass stage 1 or 2? What do I do now? Should I take medicine for it? Do I have to look into a specific diet? When is my next lab test? Is it deadly? Do I have to go through dialyze? " I thought of all those questions when I got home and could think more clearly. Later I have told the doctor that she scared me. I hope she does not do it to other people. My last 2 lab tests have been normal. But to think that since 2007 it was not normal, that was very scary. I am 73 yrs old and was following the DASH diet as I have genetic high cholesterol and osteopenia. I ate a lot of fiber, never white bread or rice, lots of water, fruits and vegetable, and most chicken and fish. I thought I was taking good care of my body. I looked at the site of the National Kidney Foundation and the American Association of Kidney Patients. That is when I really panicked, as most of the foods I was eating were bad for the kidneys. It took me a while to come down and see what I could eliminate easily. I wish no one in this world should panic as I did. Next week I am going to call the nutritionist's office and see how we can arrange to have a visit with her/him. Thank you for your support. It is good to not feel alone. Have a pleasant day, Eliana

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@paiva, Yes! Your emotions and questions were the same as mine initially upon hearing the neph's first words: "You have stage 3 ckd", with only the briefest of instruction other than stop NSAIDS and reduce Vit C. Also, with no family history of CKD, I'd never given kidneys a thought and had been basically priding myself for following a mediterranean diet and for taking such good nutritional care of my aging self. vbg

I, too, began researching Mayo online as well as other sites,including the two reliable sources you mentioned. Discovering the Devita and kidney school sites offered a wealth of information before finding the Mayo Connect kidney forum.

In a city of over 200,000 and three large hospitals, I also searched for local kidney support groups because I knew no one with kidney disease to talk with in person about this scary diagnosis. It took a long while to eventually learn that we have one kidney support grp that meets qtrly at our teaching hospital. It took a call to a private dialysis center to learn of it. I attended one session before Covid struck and was so happy to actually meet and talk with others. Some were years! recovered kidney transplant patients and one was just starting in home dialysis. The grp leader was very knowledgeable and that meeting of 11 attendees was so informative and supportive. I was amazed that one attendee was not a kidney patient but a heart transplant patient. In this city, there is not a single heart support group and this was the closest thing she could find for in person support and sharing. Imagine!

I'll be closely tracking the increasing spread of the virus in my community before deciding on whether or not to have much needed labs done in August at the Quest Diagnostic Lab my neph. uses exclusively. I worry about the lab because of crowding and walk-ins. However, I've already postponed an earlier visit and really need to have labs done to see where I am.

In times of new serious health diagnoses or while waiting for other test/lab reports to reveal more, I think the "waiting and not knowing what may lie ahead" is one of the hardest things to endure. Like you, I am so grateful that we can participate in a trusted forum in which patients can share and learn. Knowing that we are not alone and that many are contending successfully with more advanced stages and procedures is worth its weight in a ton of plutonium or platinum or maybe even fudge for those of us chocolate lovers???

If you are able to schedule a phone visit with a dietitian, you may want to have your lab values available to share so that the pro can help you devise a suitable meal plan. I kept asking for a doc referral so that ins. would help defray charges but I have to tell you, that I would have gladly spent the $330 fee out-of-pocket if I'd known what dietitian to call for an appointment.

Hope you'll be able to talk with a renal dietitian who can help guide you. Mine was a new college graduate and not with a renal specialty but his time and input for a combined diabetes/kidney diet made a huge difference in my meal planning and peace of mind.

Let us know how you are doing, ok?

REPLY

@fiesty76 and @paiva, imagine my shock when I learned all of a sudden and with no discernible symptoms I was in Stage 4 and close to Five!

The doctor who told me was filling in for my primary, who had warned me several weeks prior that I was in mild renal failure we both considered to be age-related (I was 70 at the time.) Then primary had died and I hadn't been able to see a doc for several weeks. The substitute primary went back to her regular practice and it took awhile for me to find a new primary, who gave me all the info I asked for and immediately sent me to a neph.

But before I even saw the neph I put myself on a renal diet. By the time I saw the neph I was in the upper end of Four and when she asked if I'd ever considered a vegetarian diet I started one. I had been on a vegetarian diet before and liked it, especially since the only meat I ate usually was wild game and wild-caught fish. Now I eliminated those as well and to this day have not had any meat whatsoever.

Next visit found me up from close-to-dialysis Stage 4 to Stage 3b and both of my 2 nephs and my primary credited the diet as much as anything else we were doing. By that time most of my diet was vegan but I still call myself a vegetarian because I do eat free range chicken eggs and a VERY FEW processed items containing a TINY amount of milk product.

I have fluctuated between Stage 3b and Stage 4 depending on other health factors – a case of pneumonia put me in the hospital and dropped kidney function. Function improved after that but more recently a case of shingles set me back again but my poor lil ol remaining kidney seems to have recovered and I'm back in Stage 3b.

It's not unusual, I'm told, to have fluctuations in functio measurements anyway and lab results depend on time of day and lab doing the analysis so can vary. Thank goodness for Mayo's support groups! They've taught me a lot.

I'd like to share a couple more things. Through my research I've found that Roma tomatoes have far less "harmful" mineral content than other kinds of tomatoes and can be eaten in moderation (small amounts) without going over recommended daily renal limits of phosphorus, potassium, sodium, and protein.

My favorite grocer, Hy-Vee offers miniature steam-in-bag potatoes which also fall within "good" parameters. The potatoes aren't peeled or soaked so the nutrient values are reduced further even if you don't peel them but just cut and soak them first before cooking instead of steaming whole in the steam bag.

As a diabetic I had been told portion control is very important and on my personal diet that works ok because it's taste I'm after, not volume. I can have many foods that once were thought should be avoided, partly because growers and producers, etc., have altered the nutritional values of products, partly because manufacturers now offer reduced or zero sodium, for instance, in many canned goods which already have been "leached" of extra potassium via the canning process, and partly because I can happily eat a fourth of a cup of something instead of a more common serving of a half or whole cup.

It helps a lot to come here. It also helps to look at this whole kidney thing as an adventure. On receiving the sudden and shocking "you are almost to dialysis" diagnosis I actually came home thinking I would die within a week. Yet here I am four years later and basically thriving.

I guess this is my long-winded way of saying, "There is hope." And hope visits this group often.

REPLY
@kamama94

@fiesty76 and @paiva, imagine my shock when I learned all of a sudden and with no discernible symptoms I was in Stage 4 and close to Five!

The doctor who told me was filling in for my primary, who had warned me several weeks prior that I was in mild renal failure we both considered to be age-related (I was 70 at the time.) Then primary had died and I hadn't been able to see a doc for several weeks. The substitute primary went back to her regular practice and it took awhile for me to find a new primary, who gave me all the info I asked for and immediately sent me to a neph.

But before I even saw the neph I put myself on a renal diet. By the time I saw the neph I was in the upper end of Four and when she asked if I'd ever considered a vegetarian diet I started one. I had been on a vegetarian diet before and liked it, especially since the only meat I ate usually was wild game and wild-caught fish. Now I eliminated those as well and to this day have not had any meat whatsoever.

Next visit found me up from close-to-dialysis Stage 4 to Stage 3b and both of my 2 nephs and my primary credited the diet as much as anything else we were doing. By that time most of my diet was vegan but I still call myself a vegetarian because I do eat free range chicken eggs and a VERY FEW processed items containing a TINY amount of milk product.

I have fluctuated between Stage 3b and Stage 4 depending on other health factors – a case of pneumonia put me in the hospital and dropped kidney function. Function improved after that but more recently a case of shingles set me back again but my poor lil ol remaining kidney seems to have recovered and I'm back in Stage 3b.

It's not unusual, I'm told, to have fluctuations in functio measurements anyway and lab results depend on time of day and lab doing the analysis so can vary. Thank goodness for Mayo's support groups! They've taught me a lot.

I'd like to share a couple more things. Through my research I've found that Roma tomatoes have far less "harmful" mineral content than other kinds of tomatoes and can be eaten in moderation (small amounts) without going over recommended daily renal limits of phosphorus, potassium, sodium, and protein.

My favorite grocer, Hy-Vee offers miniature steam-in-bag potatoes which also fall within "good" parameters. The potatoes aren't peeled or soaked so the nutrient values are reduced further even if you don't peel them but just cut and soak them first before cooking instead of steaming whole in the steam bag.

As a diabetic I had been told portion control is very important and on my personal diet that works ok because it's taste I'm after, not volume. I can have many foods that once were thought should be avoided, partly because growers and producers, etc., have altered the nutritional values of products, partly because manufacturers now offer reduced or zero sodium, for instance, in many canned goods which already have been "leached" of extra potassium via the canning process, and partly because I can happily eat a fourth of a cup of something instead of a more common serving of a half or whole cup.

It helps a lot to come here. It also helps to look at this whole kidney thing as an adventure. On receiving the sudden and shocking "you are almost to dialysis" diagnosis I actually came home thinking I would die within a week. Yet here I am four years later and basically thriving.

I guess this is my long-winded way of saying, "There is hope." And hope visits this group often.

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Do you eggs for protein? I understand beans are not good.

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@cldmeyers

Do you eggs for protein? I understand beans are not good.

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@cldmeyers, I must limit protein to 35 grams a day so since I don't eat any meat the eggs are an acceptable substitute. No more than three a week. I use 1/2 an egg scrambled in the microwave for a breakfast sandwich and refrigerate the other half of the beaten egg for the next day. . .

You're correct, beans should be avoided or at least limited, EXCEPT certain kinds in smaller servings than labels recommend.

For instance, ½ C (8 T) Hy-Vee no salt added canned red beans has 108 cal,115.5 mg P, 304 mg K,10 mg Na, 6.7 Gm prtn and ¼ C used as a burrito or taco filling has half that and is acceptable on a Stage 3 renal diet if you watch phosphorus, potassium, sodium and protein content in other meals the same day.

½ C lo-Na blk bns has 109 cal,129.5 mg P, 369.5 mg K,165.5 mg Na,7.3 Gm prtn.

¼ C low-Na chickpeas=55 cal, 52 mg P, 110 mg K, 5 mg Na, 2.5 Gm prtn.

Green beans are ok also, 1 C many frozen grn bns has 35 cal, 29 mg P,146 mg K,1 mg Na,<1.9 Gm prtn.

Although somewhat incomplete at the time due to lack of information available and although some values have changed slightly, I collected recipes with nutrient values for various foods and ingredients and it's here in this thread, available free of charge for you to download if you wish.

Am hoping to have a new document available soon listing nutrient values for many foods once considered to be avoided but now acceptable in some forms and/or small amounts. Will post it here as soon as it's finished but right now it's slow going as I'm having some difficulty getting permission from certaiin companies to name their brands in my recommendations. The result is I can't say Parent Company's such-and-such-name-brand fish analog has so-and-so nutrient values. Instead I have to write around it and say something like, Look on the label of the package with a picture of what looks like a fish fillet but is vegan and check to see if the nturition values resemble what is found in this collectiion for the product the writer is unable to obtain permission to name.

Stupid, right? But it's a challenge I think I can meet. (I hope.)

REPLY
@kamama94

@cldmeyers, I must limit protein to 35 grams a day so since I don't eat any meat the eggs are an acceptable substitute. No more than three a week. I use 1/2 an egg scrambled in the microwave for a breakfast sandwich and refrigerate the other half of the beaten egg for the next day. . .

You're correct, beans should be avoided or at least limited, EXCEPT certain kinds in smaller servings than labels recommend.

For instance, ½ C (8 T) Hy-Vee no salt added canned red beans has 108 cal,115.5 mg P, 304 mg K,10 mg Na, 6.7 Gm prtn and ¼ C used as a burrito or taco filling has half that and is acceptable on a Stage 3 renal diet if you watch phosphorus, potassium, sodium and protein content in other meals the same day.

½ C lo-Na blk bns has 109 cal,129.5 mg P, 369.5 mg K,165.5 mg Na,7.3 Gm prtn.

¼ C low-Na chickpeas=55 cal, 52 mg P, 110 mg K, 5 mg Na, 2.5 Gm prtn.

Green beans are ok also, 1 C many frozen grn bns has 35 cal, 29 mg P,146 mg K,1 mg Na,<1.9 Gm prtn.

Although somewhat incomplete at the time due to lack of information available and although some values have changed slightly, I collected recipes with nutrient values for various foods and ingredients and it's here in this thread, available free of charge for you to download if you wish.

Am hoping to have a new document available soon listing nutrient values for many foods once considered to be avoided but now acceptable in some forms and/or small amounts. Will post it here as soon as it's finished but right now it's slow going as I'm having some difficulty getting permission from certaiin companies to name their brands in my recommendations. The result is I can't say Parent Company's such-and-such-name-brand fish analog has so-and-so nutrient values. Instead I have to write around it and say something like, Look on the label of the package with a picture of what looks like a fish fillet but is vegan and check to see if the nturition values resemble what is found in this collectiion for the product the writer is unable to obtain permission to name.

Stupid, right? But it's a challenge I think I can meet. (I hope.)

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@kamama94 And I for one really appreciate you for taking on this project. Yes it is for your benefit, but sharing with fellow kidney disease patients here, we all get the good stuff from your research! Thank you!
Ginger

Liked by fiesty76

REPLY

Thanks @kamama94. My numbers have gone down as of 2 weeks ago, so I must be doing something right.

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@kamama94

@cldmeyers, I must limit protein to 35 grams a day so since I don't eat any meat the eggs are an acceptable substitute. No more than three a week. I use 1/2 an egg scrambled in the microwave for a breakfast sandwich and refrigerate the other half of the beaten egg for the next day. . .

You're correct, beans should be avoided or at least limited, EXCEPT certain kinds in smaller servings than labels recommend.

For instance, ½ C (8 T) Hy-Vee no salt added canned red beans has 108 cal,115.5 mg P, 304 mg K,10 mg Na, 6.7 Gm prtn and ¼ C used as a burrito or taco filling has half that and is acceptable on a Stage 3 renal diet if you watch phosphorus, potassium, sodium and protein content in other meals the same day.

½ C lo-Na blk bns has 109 cal,129.5 mg P, 369.5 mg K,165.5 mg Na,7.3 Gm prtn.

¼ C low-Na chickpeas=55 cal, 52 mg P, 110 mg K, 5 mg Na, 2.5 Gm prtn.

Green beans are ok also, 1 C many frozen grn bns has 35 cal, 29 mg P,146 mg K,1 mg Na,<1.9 Gm prtn.

Although somewhat incomplete at the time due to lack of information available and although some values have changed slightly, I collected recipes with nutrient values for various foods and ingredients and it's here in this thread, available free of charge for you to download if you wish.

Am hoping to have a new document available soon listing nutrient values for many foods once considered to be avoided but now acceptable in some forms and/or small amounts. Will post it here as soon as it's finished but right now it's slow going as I'm having some difficulty getting permission from certaiin companies to name their brands in my recommendations. The result is I can't say Parent Company's such-and-such-name-brand fish analog has so-and-so nutrient values. Instead I have to write around it and say something like, Look on the label of the package with a picture of what looks like a fish fillet but is vegan and check to see if the nturition values resemble what is found in this collectiion for the product the writer is unable to obtain permission to name.

Stupid, right? But it's a challenge I think I can meet. (I hope.)

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I have toggled between stage 3CKD and 4. I was diabetic but am no longer thank the Lord. I was told recently that potassium and phosophorus are large contributors to Kidney Disease which I was never told. I am eating less beef, more chicken and turkey and I do not like fish. I would love to have the Kamama94 cook book as I definitely need help getting my diet under control. Can you please tell how to get the book? Thank all of you for your input as it has help me greatly.

Liked by fiesty76

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OK, now you guys are making me blush. So I played in my kitchen and did a little math, anyone could do it. @dodgerfan, pleas note than some values have changed and since I collected the recipes I was able to figure out some things like phosphorus content which usually isn't listed. Be aware that there could be math errors. Everyone, PLEASE feel free to tweak, correct, even say you like or dislike ANYthing in the collection. Feedback is important! Also, share freely – copy, give away, just don't charge for it since information should be free. Also check with your care team before preparing and eating any dish.

Shared files

draft without sample meals DIABETIC AND RENAL FRIENDLY VEGETARIAN (draft-without-sample-meals-DIABETIC-AND-RENAL-FRIENDLY-VEGETARIAN.pdf)

DIABETIC AND RENAL FRIENDLY VEGAN AND NATIVE AMERICAN RECIPES - Copy (DIABETIC-AND-RENAL-FRIENDLY-VEGAN-AND-NATIVE-AMERICAN-RECIPES-Copy.pdf)

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@kamama94

@fiesty76 and @paiva, imagine my shock when I learned all of a sudden and with no discernible symptoms I was in Stage 4 and close to Five!

The doctor who told me was filling in for my primary, who had warned me several weeks prior that I was in mild renal failure we both considered to be age-related (I was 70 at the time.) Then primary had died and I hadn't been able to see a doc for several weeks. The substitute primary went back to her regular practice and it took awhile for me to find a new primary, who gave me all the info I asked for and immediately sent me to a neph.

But before I even saw the neph I put myself on a renal diet. By the time I saw the neph I was in the upper end of Four and when she asked if I'd ever considered a vegetarian diet I started one. I had been on a vegetarian diet before and liked it, especially since the only meat I ate usually was wild game and wild-caught fish. Now I eliminated those as well and to this day have not had any meat whatsoever.

Next visit found me up from close-to-dialysis Stage 4 to Stage 3b and both of my 2 nephs and my primary credited the diet as much as anything else we were doing. By that time most of my diet was vegan but I still call myself a vegetarian because I do eat free range chicken eggs and a VERY FEW processed items containing a TINY amount of milk product.

I have fluctuated between Stage 3b and Stage 4 depending on other health factors – a case of pneumonia put me in the hospital and dropped kidney function. Function improved after that but more recently a case of shingles set me back again but my poor lil ol remaining kidney seems to have recovered and I'm back in Stage 3b.

It's not unusual, I'm told, to have fluctuations in functio measurements anyway and lab results depend on time of day and lab doing the analysis so can vary. Thank goodness for Mayo's support groups! They've taught me a lot.

I'd like to share a couple more things. Through my research I've found that Roma tomatoes have far less "harmful" mineral content than other kinds of tomatoes and can be eaten in moderation (small amounts) without going over recommended daily renal limits of phosphorus, potassium, sodium, and protein.

My favorite grocer, Hy-Vee offers miniature steam-in-bag potatoes which also fall within "good" parameters. The potatoes aren't peeled or soaked so the nutrient values are reduced further even if you don't peel them but just cut and soak them first before cooking instead of steaming whole in the steam bag.

As a diabetic I had been told portion control is very important and on my personal diet that works ok because it's taste I'm after, not volume. I can have many foods that once were thought should be avoided, partly because growers and producers, etc., have altered the nutritional values of products, partly because manufacturers now offer reduced or zero sodium, for instance, in many canned goods which already have been "leached" of extra potassium via the canning process, and partly because I can happily eat a fourth of a cup of something instead of a more common serving of a half or whole cup.

It helps a lot to come here. It also helps to look at this whole kidney thing as an adventure. On receiving the sudden and shocking "you are almost to dialysis" diagnosis I actually came home thinking I would die within a week. Yet here I am four years later and basically thriving.

I guess this is my long-winded way of saying, "There is hope." And hope visits this group often.

Jump to this post

@kamama94, As shocking as hearing "stage 3", was, I can't even imagine what hearing stage 4 on the way to stage 5 must have been for you! Oh my goodness! And am I remembering correctly that you are also a nurse? If so, as a nurse, you knew so much more to be alarmed about than one not medically trained and also showing no symptoms.

Like you, by the time I first saw a neph., I'd already started researching ckd because of a written report sent from a scan stating "renal disease" and was printing out lists of "ok and "to avoid" foods.

Still hard to accept that my pcp had also seen that scan report, had been sending me regular lab reports for years but only referred me to a nephrologist when I insisted on seeing one.

Neither pcp nor kidney doc mentioned diet; I was the one who made 4 requests before being referred to a dietitian. How fortunate you found a pcp who readily answered your questions and made your referral to the specialist.

Until the pre-diabetes diagnosis, the word "diet" had never had a place in my vocabulary. Smiles While I did make a sea change by revamping my diet, I am not strictly vegetarian and do very occasionally have a small bit of meat and dairy.

Really like your closing statement and certainly agree that: "There is hope." And hope visits this group often.

How long did it take for you to finally resolve the months long shingles ordeal? Good to hear from you and that more products are now available for kidney patients. How is your revised cookbook coming along? Are you taking special health precautions along with the virus specialists' published guidelines?

REPLY
@fiesty76

@kamama94, As shocking as hearing "stage 3", was, I can't even imagine what hearing stage 4 on the way to stage 5 must have been for you! Oh my goodness! And am I remembering correctly that you are also a nurse? If so, as a nurse, you knew so much more to be alarmed about than one not medically trained and also showing no symptoms.

Like you, by the time I first saw a neph., I'd already started researching ckd because of a written report sent from a scan stating "renal disease" and was printing out lists of "ok and "to avoid" foods.

Still hard to accept that my pcp had also seen that scan report, had been sending me regular lab reports for years but only referred me to a nephrologist when I insisted on seeing one.

Neither pcp nor kidney doc mentioned diet; I was the one who made 4 requests before being referred to a dietitian. How fortunate you found a pcp who readily answered your questions and made your referral to the specialist.

Until the pre-diabetes diagnosis, the word "diet" had never had a place in my vocabulary. Smiles While I did make a sea change by revamping my diet, I am not strictly vegetarian and do very occasionally have a small bit of meat and dairy.

Really like your closing statement and certainly agree that: "There is hope." And hope visits this group often.

How long did it take for you to finally resolve the months long shingles ordeal? Good to hear from you and that more products are now available for kidney patients. How is your revised cookbook coming along? Are you taking special health precautions along with the virus specialists' published guidelines?

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@fiesty76, I kept my face expressionless until I got home and cried into my dog's neck! i WAS TERRIFIED. At almost-75, I'm not ready to leave the party. To be fair to my former primary, my labs showed declining kidney function but the numbers were consistent with aging so the "surprise" certainly wasn't his fault. He died before my numbers tanked. New primary immediately referred me to neph who immediately ordered scans and we learned left kidney was completely blocked (I have a history of kidney stones – make that past tense had) and the left kidney was atrophied. To put it bluntly, pretty well gone.

I am not criticizing anyone with the next remarks, it's merely an observation from my own experience: many dietitians have no clue about renally "safe" foods, even some renal dietitians are surprised when I tell them there's a well-known potato chip company which offers "lightly salted" snacks or that my grocer offers a store brand of unsalted chips. (Yes, they're relatively high in potassium but ok in half servings OCCASIONALLY if this doesn't make one's daily potassium too high.) Or that Azteca makes a corn tortilla WITHOUT ANY PHOSPHATES! (They were delighted for me to mention their company name.) Again to be fair, my nephrologist also shops at the same store I have my groceries delivered from and was already aware of several renally ok items but was surprised to learn that small amounts of Roma tomatoes were ok also. (She's willing to learn, which tells you how good she is.)

As for the shingles, I still have post-herpetic stinging, itching and aching along the nerves underlying areas of skin where the blisters were and my docs tell me it could be a year or perhaps longer before this finally resolves. Some days are better than others.

The sequel to the original recipe collection is at a bit of a standstill since two or three companies whose products I use in the recipes have refused permission to name their brands so I've been challenged to describe some products without actually naming brands but with enough information that anyone who follows the recipes can look for similar products wherever s/he lives.

I am in nearly full quarantine on the advice of my nephrologist since I'm such high risk. No visitors except a neighbor couple who help take care of me (the hubby is my service dog handler and a CNA) and building maintenance personnel who mask and glove and handwash on the rare occasions they need to fix somethiing in my apartment. I have several layered cloth masks with filter inserts and wear one whenever I leave my apartment to go to the lobby for my mail or to my bank monthly or to one of my doctors. I carry disposable gloves and hand sanitizer in my wheelchair pack and wash my hands constantly and tend to throw clothes into the washer immediately after an outing.

TMI, probably, but you asked. <smiles at fiesty>

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To anyone who uses recipes from the first collection, if you decide to bake the "skillet bread," I have found it's best to slice it when cool, refrigerate a small portion, then bag the rest separately and freeze because there are absolutely NO preservatives unless you opt for a pinch of salt and even that won't prevent an entire batch from molding in the fridge. In addition, though the recipe calls for a cast-iron skillet, I've had very good luck shaping the dough into a loaf rather than a disk and baking in a loaf pan lined with parchment paper.

Just FYI.
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@kamama94

@fiesty76, I kept my face expressionless until I got home and cried into my dog's neck! i WAS TERRIFIED. At almost-75, I'm not ready to leave the party. To be fair to my former primary, my labs showed declining kidney function but the numbers were consistent with aging so the "surprise" certainly wasn't his fault. He died before my numbers tanked. New primary immediately referred me to neph who immediately ordered scans and we learned left kidney was completely blocked (I have a history of kidney stones – make that past tense had) and the left kidney was atrophied. To put it bluntly, pretty well gone.

I am not criticizing anyone with the next remarks, it's merely an observation from my own experience: many dietitians have no clue about renally "safe" foods, even some renal dietitians are surprised when I tell them there's a well-known potato chip company which offers "lightly salted" snacks or that my grocer offers a store brand of unsalted chips. (Yes, they're relatively high in potassium but ok in half servings OCCASIONALLY if this doesn't make one's daily potassium too high.) Or that Azteca makes a corn tortilla WITHOUT ANY PHOSPHATES! (They were delighted for me to mention their company name.) Again to be fair, my nephrologist also shops at the same store I have my groceries delivered from and was already aware of several renally ok items but was surprised to learn that small amounts of Roma tomatoes were ok also. (She's willing to learn, which tells you how good she is.)

As for the shingles, I still have post-herpetic stinging, itching and aching along the nerves underlying areas of skin where the blisters were and my docs tell me it could be a year or perhaps longer before this finally resolves. Some days are better than others.

The sequel to the original recipe collection is at a bit of a standstill since two or three companies whose products I use in the recipes have refused permission to name their brands so I've been challenged to describe some products without actually naming brands but with enough information that anyone who follows the recipes can look for similar products wherever s/he lives.

I am in nearly full quarantine on the advice of my nephrologist since I'm such high risk. No visitors except a neighbor couple who help take care of me (the hubby is my service dog handler and a CNA) and building maintenance personnel who mask and glove and handwash on the rare occasions they need to fix somethiing in my apartment. I have several layered cloth masks with filter inserts and wear one whenever I leave my apartment to go to the lobby for my mail or to my bank monthly or to one of my doctors. I carry disposable gloves and hand sanitizer in my wheelchair pack and wash my hands constantly and tend to throw clothes into the washer immediately after an outing.

TMI, probably, but you asked. <smiles at fiesty>

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@kamama94, Hah, I didn't have to work at keeping my face expressionless at the ckd news…thought I'd been hit with a stun gun and simply froze in the chair…so kudos to you for maintaining a stoic facial expression.

While I've not delved into specific brands as you have and had only one visit with the "general" nutritionist, I can only report that his time with me was greatly beneficial. I'm sure that there are many, as with any profession like the differences between my docs and yours, who have less knowledge or willingness to share in more depth than we would wish. Think that is why becoming a a researcher and self advocate and activist for our individual maladies and symptoms is so very important.

Just darn regrettable that you are having continuing painful effects from your long bout with shingles! My daughter had to bouts, rather close together several years ago and was much younger than us. However, her second bout was the one that continued much longer with "residual" discomfort. She was in her mid-twenties at the time and will be celebrating her 50th this August. Thankfully, she's had no re-occurrences but I remember how debilitating her pain was despite her being a warrior who believes in mustering on and through challenges.

My long self-quarantine and heightened virus vulnerability is more due to asthma and chronic bronchitis. My pulmonologist cautioned that while others my age with serious health issues might become ill with the virus, if I were to get it, I would die…like you, I'm not ready to check out from the party! vbg

Quite the contrary, instead of TMI…"too much info"? I appreciate your taking the time to explain more fully and also want to thank you for these most recent posts because I've become more lax over these last weeks and need to do a review of diet. Like your precautions, I am taking similar ones whenever leaving the house. Thanks again for sharing! Take care.

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