I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: boxman55 on November 25, 2008, 04:00:02 PM
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My nepth's nurse called me and said I have been running high in potassium. She told me to stop eating certain foods and also prescriped Sodium Polystyrene Sulfonate, USP. I am suppose to take 5.3 tsp. on non-dialysis days. Anybody else use this and if so what kind of success have you hade. Thanks for the input...Boxman
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http://www.medicinenet.com/sodium_polystyrene_sulfonate-powder/article.htm
It's the same thing as Kayexalate and will help get rid of the excess K (potassium). The main thing though I think is to really be sure of what high potassium foods are in your diet and cutting them back or out altogether. Sorry to hear that there's yet another "correction" you have to make Boxman and I hope it gets back down into normal levels soon.
I think it can be hard on the kidneys but obviously they already know that yours aren't too good. :grouphug;
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Are you on a 1K bath? They won't put me on 1K here in Spokane but Sacramento did and it was fine and my numbers were great.
When I had my transplant I ran a high Potassium and we should have just retaken the lab. But instead they perscribed Kayexalate. It blew a hole in my instines. I ended up with an emergency surgery where they took out 6 inches of lower instine. I guess I had diverticulitis which I didn't know I had (who does). Then the hospital sent me a full dinner and I ate it and blew the surgery apart (you should be on a liquid diet for 7 days). I ended up with a colostomy for 9 months until the take down surgery.
Just my experience with Kayexalate. :banghead;
Tell them you want a 1K bath.
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Excellent point Rerun. A 1 K dialysate bath would be best especially since potassium is a small molecule and removes easily.
I had a colonoscopy (my request when I turned 50, more stupid me) and it showed that I had mild diverticulitis. No big deal really as many people do have it but the prep they gave me for the colonoscopy was incredibly violent, caused a small perforation in my bowel and unbelievable pain. I think all my skin and tissues are thinner from years of prednisone. Week of hospital etc. Certainly not the horror show you encountered Rerun but a lesson for me about how important it is to stress to medical types that we are often quite delicate because of what we've been going through for years.
Thanks for sharing your experience with Kayexalate. It sounds like a real nightmare.
Boxman, let us know if they have the 1 K bath.
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Boxman, I had high potassium and was put on the kayexalate, ( vile tasting stuff) but it dropped my potassium very quickly.
I was instructed to limit potatoes...(I'm Irish, that's like saying stop drinking water!) so, now I read the ingredients and limit high potassium stuff. not too difficult.
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My clinic has trouble running me on a 1k bath because I am allergic to heperin and I have to run on a citrusate bath and they say they don't or can't get the bath needed to run 1k. I personally think it is just to expensive for them. Just a guess...Boxman
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I've had both...the "K" stuff was blech... :puke; ....I can't even descirbe it but no one would share...took it for 2 months straight and changed food, then ate one tomatoe and bam...then the bath...now they are telling me to go home and eat a potatoe or peach...go figure... :Kit n Stik;
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ya the stuff taste like your drinking sand then you walk around for the next two hours like you want to "puke"...Boxman
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almost carmel sand....eech....
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All I can add is when I have been put on kayexalate in the past is not to wander to far from the toilet. Maybe it was a larger dose but I felt I had been fed a massive dose of ex-lax. Good luck with your potassium.
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My dads potassium was at 7.5 when he was admitted to the hospital. He was told to cut out potatoes, orange juice and other high potassium food. Does anyone else have any other suggestions what he should cut out??
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Does anyone else have any other suggestions what he should cut out??
Most people on hemodialysis should limit their potassium consumption to 2,000 mg per day.
Some High potassium foods:
One papaya (781).
One cup of prune juice (707).
One cup of cubed cantaloupe (494) or diced honeydew melon (461).
One small banana (467).
One-third cup of raisins (363).
One cup of tomato juice (535) or chopped or sliced tomato (400).
One baked sweet potato, with skin (508).
One-half of a medium avocado (450).
One-half of a medium potato, with skin (422).
One-half cup of cooked pinto beans (400), lentils (365), or dried peas (355).
Six ounces of yogurt (398).
One cup of 2 percent white milk (377).
One tablespoon of molasses (498).
More information from the National Kidney Foundation (U.S.A.):
http://www.kidney.org/ATOZ/atozItem.cfm?id=103
8)
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Alrighty, my s/o didn't dialize tonite. His fistula is not buzzing and his wrist hurts. The center contacted the on-call neph.
His nurse checked his labs. Potassium is 5.2 with no symptoms. I went and picked up some KIONEX, generic for KAYEXALATE.
Crap, Ray is looking at 4 days with no dialysis till things can be sorted out on Monday.
Hope you're okay Boxman. I'll post an update after his dosing. The side effects are scaring me :(
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Kayexalate is no fun. Back in August when I got sick and dehydrated and had to have emergency dialysis in the hospital, they had me drink some. I showed up at the ER short of breath with trouble standing and talking, and they took blood samples, but to be safe immediately started treating me for hyperkalemia. I got down about two-thirds of the brown gooey mud-like Kayexalate before the lab results came back showing my potassium to be okay. So then I had to take potassium pills to make up for the Kayexalate - but fixing the rest of my blood chemistry problems required dialysis.
So loaded full of Kayexalate, they hooked me up to a dialysis machine. Well, Kayexalate causes... urgency. And an hour into my dialysis, it was Urgent. No fun.
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Kayexalate affects people differently.
I've used it over the years and never had a problem with it ... except the grittiness.
At times I've added coffee and sugar to it to make it more palatable. 8)
8)
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well I made it through a week of taking the stuff and no real big problems just a feeling of nausea after a dose and a little lack of appetite. As Zach said it has a gritty taste but otherwise I am getting through it...Boxman
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Have you tried Zach's recipe?
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Boxman,
The Kayexalate made Dustin vomit and have diarrhea. He had trouble with his potassium also.
Lori/Indiana
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Does anyone else have any other suggestions what he should cut out??
Most people on hemodialysis should limit their potassium consumption to 2,000 mg per day.
Some High potassium foods:
One papaya (781).
One cup of prune juice (707).
One cup of cubed cantaloupe (494) or diced honeydew melon (461).
One small banana (467).
One-third cup of raisins (363).
One cup of tomato juice (535) or chopped or sliced tomato (400).
One baked sweet potato, with skin (508).
One-half of a medium avocado (450).
One-half of a medium potato, with skin (422).
One-half cup of cooked pinto beans (400), lentils (365), or dried peas (355).
Six ounces of yogurt (398).
One cup of 2 percent white milk (377).
One tablespoon of molasses (498).
More information from the National Kidney Foundation (U.S.A.):
http://www.kidney.org/ATOZ/atozItem.cfm?id=103
8)
Those numbers are a joke, I kept my consumption down to less than that and still had high potassium levels. maybe Im just sensitive. I cant eat anything high in potassium if i want to keep my labs within acceptable range
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Thankfully the KIONEX did not interrupt
Ray's bodily functions extremely. Will
have to wait for labs.
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Boxman, my husband has been on the polystyrene for almost a year and it has kept his potassium level down really well, with a lowK diet, until very recently. Only when his creatinine got close to 8, the polystyrene, even with a double dose, did nothing to bring the potassium down. Until the past few days, he's had no trouble with it, except the ugly taste.
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Have you tried Zach's recipe?
I absolutely refuse to ruin my coffee with that stuff. I have become a coffee snob...Boxman
On a side note I get my labs on Friday hope the stuff is working. I feel like I am on death row and they gave me the shot, and I am hoping the stuff will reverse it and extend my stay 8)
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That "S" is one of the few things that actually made me feel better so hang in there.
Ann
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Got lab results today my K dropped from 6.2 to 5.3 the gritty stuff is working. All other results where excellant from the mouth of my Nepth...Boxman
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yahoo grit.....good going Boxman.
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yahoo grit.....good going Boxman.
Thank you G-Ma
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Glad that gritty stuff worked boxman!! Hubby has had to eat MORE potassium since he started nocturnal hemo. He really had to watch everything he ate when he was on conventional. Be good if a filter could be developed for a dialysis machine that would remove more phos and potassium on conventional. The long slow treatment removes it on nocturnal.