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We have no renal dietitian available either. Even my specialist doesn't not have one. I have googled or looked at labels for everything I have put in my mouth, but my potassium will not come down. Most labels say % but that doesn't help. I am sorry about your husband. I have found that Matt's no sugar added applesauce works best for my breakfast at 6am as I am not a breakfast eater, but have type 1 diabetes and have to take insulin, so I eat. Had to find something could eat on the go as I still work and so crab 4 of the little cups, they have different flavors, but I stick to apple and it works. I also have a CGM in my arm that sets off alarms if I drop or go too high that has really helped. Problem is I only need 1.5 units of insulin for most of my meals. I used to have an insulin pump, but got divorced and couldnt afford the pump supplies without insurance so without a renal dietitian I have to guess at what falls in with the numbers. Got my labs today and still not where they should be, all got better, but without a dietitian I'm on my own. I dont trust those cookbooks because my specialist specifically said no potatoes no bananas and no prunes and those were some of my favorites. They have those in several of the recipes. I am having bathroom issues and even the high-dollar rx they told me to take didn't work. Any suggestions? I'm here if you need someone to talk to. It's a lonely life even though I have a wonderful finance and grown son, but they don't really understand and so I get lonely not having anyone to discuss things with. I have made up some simple recipes for stuffed peppers and quick microwave chicken breast. On Sundays I cook enough for the whole week as I'm not a cook and don't mind eating the same thing over and over. I'm poor and can't afford some of the things recommended to eat. Just all the specialists have almost bankrupted me.
Good luck and God bless.
Deborah Peters
Replies to "We have no renal dietitian available either. Even my specialist doesn't not have one. I have..."
@dpeters1219 I want to extend my welcome to you as well as @gingerw. She posted some good links that should provide some information about renal nutrition.
I noticed you mentioned having a continual glucose monitor and that you used to have an insulin pump. So I am guessing that your CKD is due to diabetes. Mine is too. So you have to concern yourself with the requirements of diet for diabetics as well as renal nutrition. Early on in my health journey I was blessed to find a dietician who was also diabetic and she understood the importance of proper renal nutrition. Do you have any kind of dietician who would be willing to help design a meal plan for diabetes and CKD?
My own plan involves counting carbs to determine the mealtime insulin bolus.I have an insulin: carb ratio. I avoid salt. I try to limit fat especially saturated and trans fat. I limit fats that increase LDL and try to use the “good” fats that increase HDL (things like olive oil). Be careful of low fat dairy products. Because sometimes salt &/or sugar is added to improve the flavor. This also happens a lot with condiments like salad dressings. For protein I usually go with poultry, fish, a little pork and eggs. Red meat is particularly hard on kidneys so avoid that. There is good protein in dairy products such as yogurt and cheese. I especially like Greek yogurt for breakfast. When you have kidney labs done they often include albumin or urine albumin, calcium, oxalates, phosphorus, potassium in addition to the BUN, creatinine and eGFR calculation. My nephrologist monitors these and tells me to “eat for the labs”. What he means by that is that if the things that he measures are out of range changes in diet can help improve those numbers. A good example is potassium. People with CKD often have high potassium and need to avoid foods that have a lot of potassium such as potatoes and bananas. Those links that @gingerw provided may have lists of the foods that are commonly a problem for folks with CKD.
Last but not least you mentioned having troubles affording the specialists and the insulin pump supplies. Is there a social worker affiliated with your healthcare system? This person has access to programs and resources you may be eligible for that could help. Ask at the billing department. They should be able to point you in the right direction. I have had to go this route for some of my meds, supplies and treatments.
Thank you for the information. There is no renal dietitian in our area. I have tried connecting with ones that do zoom meeting or phone visits but to no avail. My labs all came back with improvement except now my sodium is below range. My potassium went up, but I'm adjusting that. My a1c is 6.2 but my eye specialist says that because my vision starts going dark below 130, I'm not sure i can get any lower. I work and am lucky enough to work from home and so with vision issues I stopped driving. After 40 years of struggling, I got out of a bad marriage and am dating the love of my life. I have an autistic man/child that I support as well and only money that comes in from my job. There is no renal dietitian in outer area and I have tried to set up telephone meetings to no avail and since my labs came back improved i will just keep doing what I'm doing. Except now my sodium is too low. Everything else doing better. I have 2 people I can depend on no matter what my son, who is autistic and still lives with me with no monetary support and the love of my life, who after 40 years we found our way back to each other.
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@dpeters1219 Welcome to Mayo Clinic Connect! As you peruse the conversations here, you will see that most all of us agree that diet is so important to the management of our chronic kidney disease [CKD]. Whether or not we have access to a qualified renal dietician, we can still take our own steps to educate ourselves on what will work for us.
Most of us follow the "eat for the numbers" idea. Limiting processed foods/meats, monitoring our intake of protein, sodium, phosphorous, potassium, calcium, and sugar. And let's not forget that is we have other health concerns going on, our diet plan may need to include that. For me, I have to watch for my gout diet, in addition to renal eating plan.
There are several sites to go to for ideas for diet:
Renal Support Network: https://www.rsnhope.org/nutrition-data-information-for-the-kidney-diet/
National Kidney Foundation: https://www.kidney.org/nutrition
It can take time to figure out what is best for you. We all get that. But the reward is feeling that you are [more] in control. And enjoying your food.
Ginger