Dietary numbers

[Hawaii808]

My dad's renal dietitian doesn't want to give me amount of sodium/potassium/phosphorus he should be within for his daily meals. Is there a site I can plug his numbers in from his lab that will tell me how many mg is ok for him? This is new to me and I found an app to help me track this but without those numbers, the dietitian telling what I've been cooking is good is not gonna help me in any future recipes I want to try.

[Hidden]

Hi and welcome to the community.

I first saw my Renal Dietitian three years ago. We had two in-person meetings and since then we handle communications either by e-mail or phone. What we determined at the first two meetings was to explain to me and teach me how to make adjustments to keep my numbers for potassium, protein, phosphorus, calcium and sodium within the limits of the reference ranges of the labs my doctors used. I have three physicians who routinely run labs on me, a PCP, a nephrologist, and a urologist. The RD provided me with extensive lists of foods to avoid or eat sparingly.

I began with the recipes that can be found on davita.com and used them as a quide. I selected recipes for diabetics not on kidney disease. I substituted vegetables I liked for ones I didn't like. I use herbs and spices instead of salt for flavoring, I kept my portion size of protein from poultry and seafood to six to eight ounces per day. Usually close to six ounces.

Since I'm getting tested every other month by at least one of the doctors I get to see my levels of those items rather frequently. If I'm over the reference range or even within the range but at a number close to the top end I make adjustments to the meals for a period of time. This has worked well for me and I've only had to contact the RD twice since our last in-person meeting and the last time was just last fall after I had my gallbladder removed. I needed to make some adjustments to certain types of fish that had a higher fat content.

I do not use a tracker. I use a spreadsheet to keep track of all of my lab results and when I see one getting close to the upper number or even slightly over the top end, I make adjustments to my meal plan. As of now, I haven't had to increase any of the foods to bring the numbers up.

I no longer eat out because I have little to no control over their kitchen and I can't be sure of what I'm eating. Fast food is completely out of the question. I do eat a lot of vegetables but only the ones on my lists and in reasonable quantities. Brussel Sprouts, beets and spinach are off my list of foods to eat. (I wish my mother knew that when I was a kid.)

Just use his most recent lab results and look at those items and make slight adjustments to his meal plan. I do have a website for you to check out for more detailed information. Use eatright.org/for-seniors and look over their information. In the upper right corner of their home page you'll see a red box labled FIND AN EXPERT. Click on that and by using your zip code and you may be able to get more specific information to help you plan.

Best of luck.

[Hawaii808 in reply to Hidden]

Thank you! That's a great idea to log it all on a spreadsheet. He was diagnosed as stage 5, his numbers are bad, but last year were ok. We think the decline is stress and depression from losing my mom in Jan. and he's 79. Waiting to get started on Peritoneal dialysis from home, but hes itchy all the time even with phosphorous binders and I try to cook everything from scratch, low low salt, and as low as possible phosphorus. Thank you for your reply!

[Jayhawker in reply to Hawaii808]

Is his PD can heater placed? If not, how soon will that happen? Once the catheter is placed it should not take long for that to heal sufficiently to start dialysis training, etc. his data will then shift. So, perhaps his renal dietician is waiting for him to transition to PD dialysis and will then set definitive amounts. I’m just guessing on this issue though. It might be worth asking the dietician and/or his nephrologist to be sure you know what’s going on as well as what you can do in the interim to support him.

Jayhawker

[Hawaii808 in reply to Jayhawker]

He meets with his nephrologist online this Tuesday. I believe they will start to do whatever planning is needed for him to meet with a surgeon to get his cath put in. His dietician told me she doesn’t like to give out exact numbers out because it’s too hard for patients to do all the calculations. I told her there are apps that do it for you. Once he does get set on his treatment I’m gonna ask one more time, if she still doesn’t want to give me at least a range, I’m gonna look for another one. She provided no meal plan examples, just a list of foods to stay away from. There is so much info online I was disappointed in what she gave us. Thank you for your info!

[Jayhawker in reply to Hawaii808]

She doesn’t sound like she’s worth the pay. She should give you targets. And you’re right, of course, there are apps that help a lot. I always tell my medical team that I need target numbers—I do much better with target numbers.

Jayhawker

[Darlenia in reply to Hawaii808]

It sounds like you're on the right path to keep your Dad on a stable path. BUT please be very careful also about yourself. I'm a caretaker to my husband who is now on dialysis which also requires low sodium, potassium, phosphorus, etc. I was scrupulous about preparing his meals with the lowest amounts possible, eating those meals along with him. Recently, I experienced a cardiac event because my own sodium content then plummeted - driving down my blood pressure, creating bradycardia, arrhythmia and weird floating and fatigue episodes. A normally functioning adult needs certain amounts of those elements to live properly. Too little can be dangerous. No one warned me about this possibility. My own doctor is now following up with me.

[Hawaii808 in reply to Darlenia]

Thank you! I didn’t even think about that. I started getting leg cramps and realized I wasn’t eating sodium or potassium... got some bananas and added a little salt to my food. I’m gonna ask my dr if he can run labs on me.

[Darlenia in reply to Hawaii808]

Great! Please continue to keep an eye on yourself. If things do turn out normal for you, ask if anything showed up in the "low normal" range. Then keep the "low normals" in your cross hairs. It doesn't take much for those low normal elements to tip over the edge, with stunning outcomes as much of our body is "muscle" including the legs, heart, and more. I'm mentioning this because my sodium and chloride fell over the edge a little bit, they didn't need to hit rock bottom, for my body to go upside down. If possible, request a copy of your labs so you can check for yourself.

[orangecity41 NKF Ambassador]

Good points Jayhawker on diet situation. The diet for Chronic Kidney Disease and Dialysis are different. Maybe question the dietitian about that, and what should be done in the interim on what foods to avoid.

[Hawaii808 in reply to orangecity41]

Thank you!

[orangecity41 NKF Ambassador in reply to Hawaii808]

You are welcome. Keep us posted on your progress.