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Aaisha.Dar
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« on: December 06, 2018, 10:52:57 AM »

Hi all,
A few weeks back I saw my labs and my potassium was elevated to 6. I felt fine no symptoms. But the doctor did change me to K1 potassium during dialysis treatments. Yesterday I cant really describe how i felt but it was just awful. All of a sudden around 8 pm last night my mouth became numb. My arms and legs felt as if they were soo weak almost as if they were paralyzed. I was so tired and was like maybe Im exhausted and called it a day. I spent an hour in bed tossing and turning my legs honestly i dont know how to describe it maybe i could say they felt restless and weak but times that by 50. I didn't sleep all night. I felt like i was gonna collapse. I searched the symptoms for high potassium and my symptoms matched it but also they matched the symptoms of low potassium.
Why am I having such a hard time controlling my potassium now? I dont want to ever feel like that again. It was really upsetting. To be honest all I eat it dry cereals, apples, white rice, nuggets, chicken, lamb. Maybe 1 or 1 time every 1 weeks pasta or pizza with light sauce. Im fully aware of potassium rich foods. I suffered from this.problem before I started dialysis and am well educated on this topic. I just want to never experience that feeling again. Also does anyoe know how to lower my potassium besides medication? Im guessing you cant and just have to wait for the next dialysis session
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UkrainianTracksuit
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« Reply #1 on: December 06, 2018, 11:47:24 AM »

Hi Aisha, Had not seen you pop in for a bit so got a bit worried.

Youíre right: I hope no one lectures you on diet since youíve been doing this awhile. You know your limits. Be sure to check ingredients for hidden potassium sources though.

But, I just have two questions in regard to your increased K.
Did you have any medication changes recently? Certain classes of drugs cause increased K.
How is your new catheter working? Are you getting good clearance? I relied on a cath for most of my dialysis and I was constantly reminded they donít work as well as a fistula in regard to the full-effect of dialysis. Sometimes, when one isnít clearing at its best, K rises.

And yes, besides watching your diet (which you already do), dialysis and medications are the only ways to lower potassium. Otherwise, Iíd say to find some loop diuretics and pee away. Electrolyte imbalances suck...  >:(

If I were you, Iíd explain what happened at your next dialysis session and request a blood test to see where your potassium level sits now. Super low potassium is just as dangerous as too high. Take care and hope you feel better.
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cassandra
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« Reply #2 on: December 06, 2018, 02:16:31 PM »

Hi Aaisha I agree with UT that your potassium needs checking cos now it could be low. I am on 1K as I drink quite a bit of coffee. I don't like it that dialysate can just be changed without further info.


Good luck, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Aaisha.Dar
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« Reply #3 on: December 06, 2018, 08:08:49 PM »

Hi Aisha, Had not seen you pop in for a bit so got a bit worried.

Youíre right: I hope no one lectures you on diet since youíve been doing this awhile. You know your limits. Be sure to check ingredients for hidden potassium sources though.

But, I just have two questions in regard to your increased K.
Did you have any medication changes recently? Certain classes of drugs cause increased K.
How is your new catheter working? Are you getting good clearance? I relied on a cath for most of my dialysis and I was constantly reminded they donít work as well as a fistula in regard to the full-effect of dialysis. Sometimes, when one isnít clearing at its best, K rises.

And yes, besides watching your diet (which you already do), dialysis and medications are the only ways to lower potassium. Otherwise, Iíd say to find some loop diuretics and pee away. Electrolyte imbalances suck...  >:(

If I were you, Iíd explain what happened at your next dialysis session and request a blood test to see where your potassium level sits now. Super low potassium is just as dangerous as too high. Take care and hope you feel better.

Thank you for your concern. It means a lot. I have been doing okay. Ive been studying for finals which is why you haven't heard from me. Also I got the worst sinus infection which lasted a few weeks. Luckily for me they drew monthly labs today. The cath is working thank you God. Clearance is good too.
I saw that diuretics help but I do nit make sny urine for the past 6 years now. Today I feel better just stiffness in my joints when I lift up my legs. Weird thst todsy my pressure was lower thsn usual. It was in the 60s. Itvwas so low they couldnt draw blood from the line for the ktv so we have to redraw.
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LoneHighway
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« Reply #4 on: December 06, 2018, 09:31:45 PM »

I am also on a 1K bath due to chronically high potassium. My clinic claims itís dangerous and they are putting everyone using the 1K on a potassium binder called Veltassa. For whatever thatís worth.
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Aaisha.Dar
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« Reply #5 on: December 06, 2018, 09:40:33 PM »

Can 1k bath make a huge difference? I mean you are still receiving potassium am I right? Its difficult tho becsuse the symptoms for either high or low potassium are the same
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Charlie B53
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« Reply #6 on: December 07, 2018, 02:26:55 AM »


Have you looked into the potassium values of your cereals and those chicken nuggets?   If they are even at moderate levels because of the amounts you are eating you may still need to make some adjustment in the types so as to lower your daily/weekly intake of potassium.

When I switched from home PD to in-clinic Hemo I had to re-learn how to eat as I could no longer have the amounts of potassium and phosphorus that I was used to eating.  It took me a while to learn as I had to start looking into the values of everything.  I never had to do this on PD so it was a serious learning experience.
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UkrainianTracksuit
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« Reply #7 on: December 07, 2018, 06:21:17 AM »

Itís good that you had your monthly labs drawn yesterday. Youíll have a idea of your current numbers. I hope that you will mention what happened at home at your next appointment still.

Youíre right: right now we donít know if youíre still high or low K. Or back to normal! However with symptoms that could be either/or, itís best to have a current level. It might not even be potassium related at all since the hi/lo symptoms can be common for other things. But besides that, there are times there are blips in the blood work. If your potassium has been in good ranges up until this point routinely, something you ate might have ticked it up before your monthly report. Yes, with a 1K bath, you still receive potassium but with a low potassium diet (as you describe), it might not be enough if your levels are generally good.

I regularly had a K3 or K4 bath because my potassium levels ranged from 3.1 to 4.8. Mostly lower all the time. Once, I ended up eating a whole beefsteak tomato because I lost self control. Next thing I know, Iím over 6, get a warning from the dietician and a lower bath. Back on my normal diet, with a normal bath, and regular dialysis, I was back in my low zone.

Charlie is right that patients need to check the ingredients foods like cereal and chicken nuggets. There are hidden sources, usually as preservatives or salt substitutes. I know that some prepared meats have a wheat based coating or contain wheat products so they have potassium we wouldnít think is there.

Youíll figure it out!  :) And good luck with finals!
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Aaisha.Dar
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« Reply #8 on: December 07, 2018, 02:04:58 PM »

I got my labs potassium was 5.9 its elevated a bit and i dont show aymptoms at that level then I saw my calcium its 7 which is an extremely low. My pth is always low 110 but nobody is worried about that. I think my calcium level can explain how why I felt awful. I will take my tums and hopefully that will do the trick. To all of you who showed concern thank you. Your suggestions and advice are more than what my doctors have given me.
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cassandra
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« Reply #9 on: December 09, 2018, 02:14:08 AM »

Good to hear you 'know where you are' with your bloods now.


Love, luck and strength, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
GA_DAWG
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« Reply #10 on: December 09, 2018, 10:05:03 AM »

Hey Aisha, sorry to hear you are not feeling 100% but good to hear from you anyway. The pTH numer is the one I have to admit I do not understand. My other numbers, including potassium and phosporus will usually be right at the low end of what they want, but pTH will be high. To start with they wanted it to be between 150 and 300. When it started being above that, they just changed the acceptable range to 300 to 600.
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Aaisha.Dar
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« Reply #11 on: December 09, 2018, 02:23:20 PM »

Pth is always tricky for me but mone usually stays within 100. I feel like anything up to 200 or so isnt that bad because i used to be in thr 1000s
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Simon Dog
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« Reply #12 on: December 10, 2018, 07:56:47 AM »

Quote
To start with they wanted it to be between 150 and 300. When it started being above that, they just changed the acceptable range to 300 to 600.
I think some guideline changed, because I was also exposed to the 300 became 600 guideline when I was on D.

Now that I am post-xplant, the nephrologist that is part of the hospital transplant team is treating me with Sensipar because I an at 500 unmedicated.

Sensipar should be delivered by armored car.   CVS wanted $1600 for a 30 day supply.  It seems my insurance would only authorize a 90 days supply, and the copay for that is $75.
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