High potassium Pre-ESRD

[Deanne]

At what point before you needed dialysis did your potassium level start to increase? I'm at about 25% function and have been battling high potassium for about a year. Is this "normal?" I felt like having a temper tantrum when my neph's office called to tell me it's still 630. I feel like I need to stop eating everything and just start sucking lemons a few times/day and convince myself that they're food and I'm not really going to starve to death.

[paul.karen]

 

I should really learn what all the terms i keep hearing are and mean.
Sorry i cant help you Deann,  But i look forward to hearing the responses you get.
Guess ti is time for me to learn all this stuff.

Ps.  ill eat lemons with you.

[annabanana]

My husband is fast approaching dialysis at 15% right now. He's had high potassium since last January, but probably before that. For quite a few months he controlled it with a decent low-potassium diet. The diet sucks...but it's doable.

[Zach]

No need to starve yourself.  Why not just start using the renal diet and limit your potassium to 2,000 milligrams a day.
Ask your Nephrologist for some guidance.  

[Deanne]

Doesn't the renal diet call for high protein? I'm supposed to follow a low protein diet. I see my neph in a couple of weeks. Maybe it's time to ask for an appointment with a dietician.

[Zach]

Doesn't the renal diet call for high protein?

You're absolutely right.  My bad.

[Pierre]

Doesn't the renal diet call for high protein? I'm supposed to follow a low protein diet. I see my neph in a couple of weeks. Maybe it's time to ask for an appointment with a dietician.

You shouldn't mix things up. There are different diets for different times.
When you're pre-dialysis, your kidneys still work but at a slower pace, so you need to help them: less protein (80 % of normal intake), less potassium-rich foods if necessary according to the bloodresults, and maybe look at the phosphorous too. But always ask advice from your neph and a dietician. You need potassium so you can't limit these foods too much.
When at dialysis, you need more protein (120 %), and you need to adjust your food to your bloodresults.

[Ken Shelmerdine]

Before you do something drastic about your diet ensure you are not taking any medication that can increase serum potassium levels. The BP drug Candesarten is a prime example or any drug which belongs to a drug goup known as Angio Retensin Blockers.

[Deanne]

My neph cut my AC-I in half a few months ago with hopes that this would help with my potassium problem. It didn't help at all. My potassium level is still at 630. She (neph) asked me earlier this week to totally cut out all high potassium foods and re-test next week. I hope something that can be done to restore my diet to some degree. I know I can't eat all the high potassium foods I want to anymore, but for now, I'm trying to stay 99% away from everything except for the foods in the low potassium list that they gave me.

Maybe it's time to stop taking the AC-I altogether, but there's a concern that if I do, then I'll start spilling a lot of protein again. I'm only spilling 2-3 grams/day right now, instead 10 grams a day like I was doing a few years ago. Don't diuretics leach potassium from your blood? Maybe my neph could put me on lasix. I get pretty puffy sometimes and was considering asking for a diuretic to help with that anyway.

My potassium level is still fine. I'm anemic, but that's pretty well controlled by taking iron supplements for now. I'm grateful that this is the worst problem I have. I just need to keep reminding myself of that.

[monrein]

If you're still peeing then l would definitely ask about hydrochlorothiazide or lasix or some kind of diuretic.  I took Hcl while my transplant was failing but stopped as soon as I started D and my urine started drying up.

[Sunny]

Hope things get better for you soon and you manage to find a way to control the potassium levels.

[Razman]

I'm in the same place that you are.  Pre-dialysis with high potassium level and I watch my diet very carefully.  I just started taking Kayexalate ( sodium polstyrene sulfonate)  but I'll have to wait and see how it works out.  It causes constipation and I don't like it.

[Restorer]

Unfortunately, I didn't find out I had kidney disease until my GFR was around 8. The incident that got me diagnosed was a heart fibrillation (my heart stopped effectively pumping blood for several seconds) followed by supraventricular tachycardia (self-sustaining heartrate over 250), which was caused by high potassium. Ironically, I hadn't had much potassium that day - the only things I'd eaten were a bowl of Indian palak paneer (spinach and cheese, but really only 700 mg of potassium or so) and a Coke. The problem was that I had a stiff neck and took an ibuprofen, which apparently can cause potassium shifts into the blood - and that set me off.

Before I was diagnosed, I'd had the same problem, but it didn't have the last effect of the tachycardia. My heart would essentially stop (though I'm betting, with the way it felt and the fact that it fixed itself) for several seconds, long enough for me to start to blackout. I remember the first time it happened, but I don't remember exactly how long ago it was. It couldn't have been less than 4 and a half years ago... and I was diagnosed 1.5 years ago. On that day, I must have had hash browns for breakfast, or something - and a sudden burst of activity set it off. It also happened a couple other times: once in a computer lab, where the factor may have been carrot juice; and once at home after dinner, where the factor was definitely potato salad.

[Romona]

I had to follow low sodium, low phosphorous, low protein and low potassium. Very boring and hard to figure out what to eat.

[Jannie]

Definitely speak with a nutritionist. Ask your kidney doctor for the name. My doctor has a nutritionist on staff. I spent three sessions with her. I was so confused and depressed over all the food restrictions, low salt, low protein, low potassium. low phosphorous. Now that I'm on dialysis, it's high protein and fluid restriction. It can drive you crazy!

[Deanne]

After being a total angel for a week and then re-testing, my potassium level hasn't budged an iota. I've hardly eaten anything but canned soup (I know the sodium is bad), pasta with almost nothing on it, and more soup (home made and mostly noodles). I gave a neighbor my spinach and avacodos (crying) so I wouldn't be tempted by them. My neph's office called to tell me to discontinue lisinopril and to drop everything to go pick up a prescription for lasix and take it tonight. While I love getting such great care, I stilll hate calls like this! I hate the "Drop everything" tone. I'm sure my potassium level has been 630 for at least a couple of months. There's no reason to try to scare me over it. Start taking lasix TONIGHT!? I'll be up all night peeing! sigh. I took it. The want me to retest again on Friday.

[graftgurl]

Deanne, you need to make sure they follow-up on your potassium level once you start taking the Lasix. Depending on how much they prescribed for you each day, it can actually bring your potassium level too low. You will definitely know when that happens because you will get some of the strongest cramps you've felt. With all you have going on it would probably be best to ask for an appt. with the dietician. Even before I started dialysis my protein levels were very low and so while most renal patients are told to limit protein intake, I have always been told to increase mine. The blood test looks at albumin and is a routine test. I hope you are able to find a happy medium that will keep you steady and off of dialysis. 

[Deanne]

Thanks graftgurl!

They had me take 40 mg of Lasix for just two days and then sent me to re-test my potassium level this morning. I started getting bad leg cramps just a few hours after taking the first Lasix tablet, so I'm very interested in finding out where my level is. It seems hard to believe that it could drop from 630 to below normal after just a couple of hours. I'm wondering if my body is just so used to being high that even dropping down to a more normal potassium level could have triggered the cramps while my muscles re-adjust. I expect they'll call me this afternoon with the results and what they want me to do next. They told me to discontinue lisinipril, but only to take Lasix for two days. It makes me nervous to mess with my bp meds. The lisinopril was keeping my protein spill down to below 3 grams / day. Without it, will I start spilling 10 grams / day again? I guess only time will tell. I know I feel a bit yucky today. I'm not sure if that's from a change in potassium level, or if it's from the Lasix though. I see my neph next week. She's been on vacation this week, so other nephs in her office have been working with me on this.

[graftgurl]

For a starting dose of Lasix, 40mg is strong. This is how it works (taken from pharmaceutical dictionary):  "It works by increasing the amount of salt and water the kidneys remove from the blood. This extra salt and water is passed out through the urine. By increasing the amount of water removed from the blood, Lasix causes a decrease in blood volume. Because of this effect, the medication can lower blood pressure and can also help with water retention."  Potassium binds with sodium (salt) and so it is removed from the blood as well.One of the reasons they probably had you stop the Lisinopril is that Lasix can cause your blood pressure to drop. They didn't want you to feel weak or pass out because of low blood pressure.  Other potential side effects are dry mouth, thirst, and of course, cramping. The docs may have you start back on the BP meds once the Lasix has been processed by your body and the chance of low blood pressure has passed. One last tip -----> as long as you are urinating well, you don't need to worry about taking the Lasix. If you are not, then it is best to stay away from it and if your urine output decreases instead of increasing after taking the Lasix, you need to notify your doctor right away.

Let us know how your labs come back and how you are feeling. 

[Deanne]

They didn't call this afternoon with my lab results.  I guess I'll find out on Monday. For now, I'm off both Lisinopril and Lasix, and only taking Norvasc for BP control. I'm sure my BP will increase a bit this weekend without the second BP medication, but I'll keep an eye on it and go back on Lisinopril if it gets too high. They think the Lisinopril might be why my potassium went so high in the first place. My neph said Lisinopril can increase the potassium level in some people. I've been on it for about 10 years with no problem, but I'm older now, my kidney function is less and maybe I'm getting more sensitive to side effects.

[Deanne]

Whoo hoo! My potassium is 480!  My neph cut my dose of Lisinipril down to 10 mg from 20, increased my dose of Norvasc to 15 mg from 10, and added Lasix permanently at 40 mg. I still need to stick to a lot potassium diet  I'm sad about that, but I'll adjust. I think I'll just come up with one day / month when I allow myself to eat anything I want. I'll put it on my calendar, so I'll always know I'll have something to look forward to. Hopefully, that'll help me keep from cheating. I'm already trying to decide between a burrito or a trip to McDonalds. I'm thinking Thanksgiving week. I don't "do" Thanksgiving itself, so I don't need to save my day for that.

My PTH has gone a bit high now at 74, but she said it isn't to the point where I need to treat it. It's just something to watch.

My neph says she's amazed that I'm doing so well yet. She said when she started seeing me about 8 years ago, she was sure I'd be in kidney failure by now, but I'm still hanging steady at about 25% function.

[Lori1851]

If you eat potatoes soak them over night in water that will help lower the potassium.
Lori/Indiana