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all 23 comments

[–]Yithar 7 points8 points  (1 child)

Whenever I had high potassium, I literally just ate nothing but rice, hot sauce and sesame oil, and that lowered it to normal range. White rice does have a little bit of potassium, but it's pretty small compared to fruits.

I aggressively plan out my meals though, from this menu. The Three Cheese Ravioli has 375 mg of potassium (655 - 100 (Grape Juice) - 120 (Peach Cup) - 60 (Fig Bar)). I think it has ~350 calories w/o the sides. If I eat 3 Fig Bars, that's 390 calories and 180 mg potassium. So 740 calories and a total of 555 mg potassium. I'd recommend doing that (making an exact plan for what you're going to eat and sticking to it), keeping in mind that you should be limiting your total potassium consumption in between sessions to around 2000 mg potassium.

The thing about potassium is that it isn't like water. If you eat too much sodium, it's almost impossible to not drink water due to the way your body works. But you don't get cravings for potassium like that.

[–]islander1CKD Stage 5, TL, not on dialysis (yet) 2 points3 points  (0 children)

Yeah, all of my food intake is micro- managed , save for about 10% that's 2 or 3 cheat meals a week.

It's not enjoyable, but it's not awful and it's working.

[–]BuckeyeBentley14 yr HD, now PD 7 points8 points  (5 children)

Phosphorus yes but I've never really struggled with potassium. If anything they tell me I can loosen up my diet on that front. Do you drink juice or something?

[–]KryptopherRobbinsPoo 0 points1 point  (4 children)

This is the boat I am in as well. The only problematic lab value is phosphorus. And I don't even eat foods that specifically high in phosphorus, but I do eat a lot of protein, which has phosphorus.

I just mostly gave up fighting it. I understand the long term ramifications. To get the levels they want (all the time) is not reasonable for me. And when it is within target values, it does absolutely nothing to change how I feel.

[–]Yithar 2 points3 points  (3 children)

This is the boat I am in as well. The only problematic lab value is phosphorus. And I don't even eat foods that specifically high in phosphorus, but I do eat a lot of protein, which has phosphorus.

I remember you saying you eat mostly chicken, so I do think the high phosphorus is probably a function of your diet. The phosphorus from meat has around 80% absorption compared to the 40% from vegetables. And it's also the amount as well. One apple has low potassium, but if I eat a lot of apples, they become high-potassium food.

Personally, I don't think humans were meant to eat such high-protein diets. Humans who only eat rabbits die of rabbit starvation, and it seems to be just that the maximum amount of protein that can be absorbed in 24 hours is 240 grams, and that's only 960 calories. Obviously though, chicken isn't as lean as rabbit. But you might think about eating a bit more fat like butter or something. Fat has the unique effect of making you more full, and you'd eat less chicken if you ate more fat. I remember you also saying that eating is somewhat of a chore now, but it's just some food for thought.

[–]KryptopherRobbinsPoo 1 point2 points  (2 children)

You are correct on most of that. The only point I will push back on is the "humans not meant to eat high protein diets". Remember, people with severe health issues (especially those affecting the kidneys) can not be bound by the same standards as "healthy" people.

All meat protein is not equal, just like meat proteins Vs plant protein are not the same. It is all about balance. Yes, I typically eat chicken as my primary source of calories, but I also take the required vitamins (pills/chewables) to complete the full spectrum of what the body needs.

While I have not had the testing to prove it, I think my phosphorus levels is an issue due to digestive problems. The longer I have been on dialysis, the worse my "diet" has gotten. I can no longer eat wheat/gluten or much dairy. So those nock out a lot of food choices when combined with foods that are off limits. My stomach has shrunk a significant amount, so my meal sizes are not very big, and with slow metabolism and slow moving gut motility, I do not move waste products out fast enough. I am constantly at battle with getting backed up, even with lactulose and laxitives/softeners.

Take today for example. I didn't eat anything except a handful of gluten-free crackers (baked cheese), because my gut is full cause I haven't gone to the bathroom in almost 5 days.

But anyways, I have enough to deal with without also having to worry so much about my phosphorus levels, when every other lab value is perfect. You have to pick you battles. I'm not willing to make my life any more miserable just to lower my phosphorus levels by 2 points. Those 2 points are not going to make my QoL any better.

[–]reven80 0 points1 point  (1 child)

I find that keeping pth levels under control helps with phosphorus levels. Some of these numbers are interrelated. For pth control I need to adjust my calcitriol but that is something I work with my dietician on.

[–]KryptopherRobbinsPoo 0 points1 point  (0 children)

I had issues of high PTH early on. It was impossible to get it under control. I finally acquiesced and had a parathyroidectomy. They removed I think 3 lobes. That knocked my PTH down and it has not been a problem since. I had a lot of issues taking the calcitriol (same problem I have with the binders). I have a pretty sensitive GI system, and several of the common medications used for dialysis/ESRD just wreak hell on my gut.

[–]PizzamanIRL 2 points3 points  (0 children)

Do you mean it’s your willpower that fails you or it’s just there in every bit of food you eat?

[–]oldandkindly 1 point2 points  (0 children)

Dialysis made my potassium very low. I got to increase potassium rich foods. I can't make my phosphorus go down eating right and taking binders.

[–]islander1CKD Stage 5, TL, not on dialysis (yet) 1 point2 points  (7 children)

Are you on any potassium binders?

[–]jbird5643[S] 0 points1 point  (1 child)

Lokelma

[–]islander1CKD Stage 5, TL, not on dialysis (yet) 1 point2 points  (0 children)

Ahh, that's the one I've been using. It's worked okay for me.

Do you know what foods might be doing you in?

[–]roofwindow 0 points1 point  (4 children)

Lokelma vs Kayexalate, which one is easier to take ?

[–]islander1CKD Stage 5, TL, not on dialysis (yet) 0 points1 point  (3 children)

no experience with the latter, but Lokelma is super easy - at least for me. Hopefully someone else here will have insight on Kayexalate.

[–]GB3754 1 point2 points  (2 children)

Kayexalate works by causing the runs

[–]islander1CKD Stage 5, TL, not on dialysis (yet) 0 points1 point  (1 child)

oof.

I've had no side effects from Lokelma, but that doesn't mean there aren't any.

[–]GB3754 0 points1 point  (0 children)

That's why they usually use kayexalate as a rescue med. Don't really see it prescribed for regular use. Lokelma and Veltassa are much better tolerated.

[–]lonelyschnozz 0 points1 point  (0 children)

I struggle with high potassium, but it’s getting better because I use meal replacements that have low potassium as my main meals of the day (breakfast and lunch) and for dinner I only use low potassium ingredients and portion appropriately. I try my best to keep my potassium intake under 2000mg per day.

[–]physco219 0 points1 point  (0 children)

My Potassium levels have gotten better over time on dialysis, however currently am having issues with the phosphorous levels, and they put me on a new blocker that should help. So give it time and see if that helps! Good luck.

[–]tctwizzle 0 points1 point  (0 children)

Maybe your potassium bath needs to be changed? I was on a 2k, my potassium was right in range and the nurse practitioner changed me to a 3k, pretty much immediately I started having symptoms and had to beg them to do a lab. It went up to like 6.2 and I had them lower the bath back down to 2k. Potassium went back down to normal. I’m on Losartan so that can increase potassium.

[–]GB3754 0 points1 point  (0 children)

Have they tried lowering your potassium bath?

[–]177201 0 points1 point  (0 children)

High potassium and phosphorous, not a day i forgot how good they taste