I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: enginist on March 11, 2019, 12:49:42 AM
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I've had CKD for two years and recently saw a renal dietician for the first time. My GFR fluctuates, but after I went vegetarian, about four months ago, it jumped from 19 to 26, where it stands today. My other numbers are pretty stable and generally within the accepted range. Sodium is 130 (133-146), potassium is 4.5 (3.5-5.1), and phosphorus is 3.3 (2.5-5.0). As a label reader, I try to limit my intake of each of these three minerals to less than a 1,000 mg per day. However, since labels are not fully informative, I really don't know for sure exactly how much of each I am consuming. But I think I'm under a gram for all three.
Anyway, the dietitian I saw last week recommended that I expand my diet, making it much less restrictive. She said that I should virtually double my sodium intake to 2300 mg and my potassium to 2000 mg. According to her, phosphorous is not the evil entity that current thinking makes it out to be. Most surprisingly, she said I could have three free meals per week, whereas my nephrologist said I could have only one. And she said that the free meals could include tomatoes and even french fries.
This is a great improvement for anyone who likes food and is on a renal diet. My question to all you veterans is whether the diet is so liberal that it would affect my lab results. I'll know for certain in a couple of months when I'll have my next blood draw. In the meantime, though, I'd like to know what you think. Maybe more sodium and potassium could make me healthier than I am right now, although, except for sporadic itching, I'm largely symptom free. Maybe, as an avid runner, I could use more electrolytes. Maybe I could regain some of the speed and endurance that I've lost to this disease. I don't know. I could use some of your expert advice.
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Congratulations on the beautiful lab numbers! It's awesome to have some wiggle room!
Before starting dialysis, I went full throttle with the standard renal diet per my neph's orders and my labs from my first treatment demonstrated a very low potassium -- turns out my kidneys were still handling potassium at almost normal levels!
So my renal dietician encouraged me to occasionally have more bananas, orange juice, potatoes, spinach -- all that wonderful potassium-rich deliciousness! Enjoy it, she said. She said my body wasn't always going to handle potassium that well as my kidneys gradually continued to lose function, so now was the time to enjoy the freedom and benefit from those foods while I could, as eventually I would lose enough function to require full restrictions soon enough.
I my experience, it's not unusual for nephs and dieticians to disagree. Mine have collaborated together for years and it seems like the neph is more focused on meds/treatment and my dietician is more focused on food intake, and that's just how they work things out between them in a balanced and respectful way.
I'm a little shocked by the sodium recommendation to 2300, so I'm curious to see what the others have to say. Both dieticians I've worked with have said that even healthy people shouldn't go over 2000mg sodium.
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Lorinn, you're right to point out that 2300 mg of sodium is a bit on the high side, with some studies recommending 2000 or even as little as 1500 mg per day. Naturally, though, when it comes to the medical sciences, there is conflicting evidence. It seems that too little sodium can be as bad or worse than too much, resulting in a greater risk of heart failure, a risk pegged in 2011 at 60 percent. I don't know if the consensus has changed much since then. I'll raise my intake for a couple of months and see what happens. I do drink a lot of water--about three quarts a day--and sweat from exertion in the summer, so I may be washing some of those electrolytes away. But that isn't ideal either. Every couple of years or so somebody drinks too much water and dies from water intoxication during a marathon.
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Maybe, as an avid runner, I could use more electrolytes.
This might be at the core here.
Yes, it is true that we need to be careful in our consumption of sodium and potassium but in the end, they are electrolytes. They need to be kept in balance, with each other, so that we feel our best. Sometimes if sodium readings are high, or low, it does not necessarily correlate with our sodium intake. It means our electrolytes are off balance for whatever reason, such as dehydration or post-exercise state.
Although we restrict potassium with CKD, it is a vital mineral for body functions. Your potassium is right in range but when we get too restrictive, we have to be careful, that it does not drop too low either. That comes with its own bad of problems. Since your function is doing well enough, and you are an avid runner, you probably could include some extra foods, as you might need it. (Although low potassium is more of a dialysis concern rather than pre-dialysis, where you want to stay!)
LorinnPKD is so correct in that there are instances where nephs and renal dietitians differ on how to go about diet management. It seems strange to say but if you feel in your gut it does not feel right, like having an avocado and french fries, or avocado fries, in the same day, don’t. You can do as your dietitian says and then base your future diet/decisions based off the results.
Enjoy what you can while you can. Here is hoping that your kidneys maintain this sort of function for an extended period of time though! I was lucky in that on dialysis I had few potassium restrictions. I had a high potassium bath and ate potatoes sort of thing. We are all different when it comes to diet and dietary needs so definitely take your dietitian’s advice into consideration. And if it negatively influences your bloodwork, well, you know what to resume.
When I was around 26 to 30% eGFR, my diet was fairly liberal. Don’t get me wrong; I watched. Been a label reader all my life (Type 1 diabetes since birth) so that came naturally. However, for “free meals” I spread them out and I differed the foods. Such as, if I had a tomato based meal at lunch on a Tuesday, I’d have an oatmeal/kiwi breakfast on Thursday. I did not consume animal proteins either and I believe, personally, that helped the most in retaining my function as I did. My iron stores and stuff never suffered.
The sodium is the odd thing here but it could be because the dietitian is juggling with the potassium too. You know, like try to find a balance in electrolytes? That sort of thing but, if it has a negative effect on function, I’d be a tad more concerned. I am post-transplant so my diet is back to normal but, I am on a higher sodium intake just because my blood pressure is so low. Never do I seem to reach that sort of 2300 mg quota because I’m not used to sodium nor do I like salty sorts, even hidden, foods.
Keep us updated on this! Will be interesting to see what happens. Good luck!
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Thank you for your insights, UT. Unlike yourself, I do have animal proteins with my free meal, meaning anything I have a craving for, which usually will be something from the three basic food groups: meat, potatoes, and gravy. If I am going to deviate from my vegetarian diet, I think I'll stick to one free meal per week. Three times a week would be too much. Like you, I think that minimizing, if not completely eliminating, animal proteins from my diet has helped my kidneys stabilize. I also credit lisiniprol, one of the ACE-inhibitors, for controlling my blood pressure. Maybe I'll substitute a modified version of the Mediterranean Diet for the renal diet. I'd eliminate the fish and poultry but add nuts for the sodium and tomatoes for the potassium. I've found that rice and beans are greatly enhanced by a can of stewed tomatoes.
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Keeping in mind "All things in Moderation."
Compromise.
Dietician says three, Dr says One, I'd go with Two.
It all depends on what and how much. Your labs are well enough that you can afford to splurge once in a while but stay within reason.
My Labs are mid-range like yours, so once or twice a month I split a banana with my Wife.
Once a month I might make Tomato soup for us my way, adding a can or two of crushed tomatoes. Or my spaghetti sauce. But I do limit these to no more than once a week. Some can handle twice without seeing much change in their labs.
You just have to stay careful and keep having those labs done. You will see changes then adjust accordingly.
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I've found that rice and beans are greatly enhanced by a can of stewed tomatoes.
:thumbup; :thumbup; :thumbup;
This is one of my favorite things to do and there are so many options to play with to add flavor. I did something similar last night for dinner because I was lazy. Stewed tomatoes, small pasta like orzo and lentils, onion, zucchini, eggplant. It's a little extra work but I like to make my own stewed tomatoes. That way, I can control the sodium and preservatives.
Yes, I was told many moons ago (we’re talking paediatric nephrologist era) that anything with –pril in regard to controlling blood pressure is a good fit for those with kidney disease. For some reason though, I had awful side effects and I ended up on a calcium channel blocker, ARB (angiotensin II receptor blocker) and Lasix. Blood pressure was generally okay on this until the latter end of Stage 4. Then, I had a beta blocker added. I have low blood pressure issues post-tx now but I remain on a low dose of the beta blocker because I was born with a fast heart rate, for some reason.
I consider myself lucky because my main nephrologist said he was surprised how long my kidneys lasted on their own. A bit of luck and proactive measures did it. So, I hope, with your current measures and being on the ball, that you can extend your function as long as possible.
:) A good and renal friendly diet surely helps!
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The last two posts distill the essence of what it takes to successfully manage this disease: luck and moderation.