What the hell is it with me?

[Panda_9]

Ive been on in centre Dx for the past week (going this week as well), doing 5-6hrs each time. Well, I got in there yesterday and decided to do bloods just out of curiosity. Well lucky I did because my potassium was 6.2  I was very good and tried my best to eat properly between treatments. I dont know how I would ever cope if I were to for some reason not able to do nocturnal. I would be expected to have the "weekend off" like everyone else, but I could just see myself either eating nothing, or ending up in emergency all the time. Im in centre at the moment for a break, and doing one night at home on weekends. I am so pissed off right now because I cant even enjoy a break without problems!!! 

[Fighter]

After the weekend I sometimes have 6.5 (if I do, the doc circles the value in red on my results sheet) or even 7 (then I get exclamation marks along with the circled figure!). But I've never really felt the symptoms of hyperkalemia. I met this other young guy who is on home hemo the other day and he told me about a severe bout of hyperkalemia in which he had to crawl to his machine and pretty much assemble it with his teeth because he couldn't move his arms and legs! I wonder how much potassium he had that day! Apparently his mom had decided to stuff him with french fries. But thankfully after an hour of dialysis the symptoms vanished.

What's your worst hyperkalemia experience?

[Zach]

After the weekend I sometimes have 6.5 (if I do, the doc circles the value in red on my results sheet) or even 7 (then I get exclamation marks along with the circled figure!). But I've never really felt the symptoms of hyperkalemia. I met this other young guy who is on home hemo the other day and he told me about a severe bout of hyperkalemia in which he had to crawl to his machine and pretty much assemble it with his teeth because he couldn't move his arms and legs! I wonder how much potassium he had that day! Apparently his mom had decided to stuff him with french fries. But thankfully after an hour of dialysis the symptoms vanished.

What's your worst hyperkalemia experience?

I've heard those Belgian frittes can be a real killer!

[Fighter]

I've heard those Belgian frittes can be a real killer!

You got that right! And not just for dialysis patients! 

[Panda_9]

Highest Ive had is 6.8, and I had weakness in the limbs, nausea, and by the time I got into ER for treatment I was twitching and a bit vague. I was at the shopping centre and had been feeling pretty off, and almost collapsed when I stood up. I didnt think anything of it until I got home and my temperature was 39 (no idea why). If it wasnt for the high temp I probably would of died as it was the only think that prompted me to go to hospital. It is EXTREMELY important that you learn to recognise the symptoms so you can seek treatment early. If you are at the point of crawling to set up the machine you should be ringing an ambulance and not mucking about. He was very lucky that he got on the machine without dying in the process. I have come across so many patients that really dont realise the seriousness of high potassium.
If you have a heart attack as a result of hyperkalaemia, it is very unlikely that you can be revived as there is no way of bringing the potassium down quick enough to get your heart started again. I have learnt my lesson enough times now, and its just not worth it...... cheating on the diet that is. If I so much as look at a tomato my potassium doesnt like it!

[Sara]

Sorry Amber. 

What are the usual symptoms of hyperkalemia?

[Zach]

http://ihatedialysis.com/forum/index.php?topic=1220.msg22742#msg22742
I think it's true to say  we become experts of our own health condition. When I was pre-dialysis my potassium level went to 6.9. This level was considered to be so bad that I got a call to go to A&E immediately. They took it again at the hospital and it had come down to 6.2. which is still high. Now a few weeks previously I'd asked my renal doc if I could reduce the strength of one of my BP meds  (Beta Blockers) and maybe compensate with a higher dose of the other tablet I was taking (Candesarten, an ARB blocker) He cut the beta blocker to half strength (2.5ml) and doubled the ARB to 16ml. The day I got the call to go to A&E I had earlier in the day seen an article on the net about a clinical study that indicated ...wait for it.... raised serum potassium blood lab readings in patients using ARBs. I mentioned this to the A&E medic and after disappearing for about 10 minutes I guess to get someone else's opinion or look it up in a book,(God knows) He came back and agreed that yes this could indeed be the cause..Doh, Who's the bloody Doctor??!!!!!!!! Came off the ARB completely, replaced it with a diuretic and in 2 weeks it was down to 4.8. 

Amber, are you in this situation, too?

[NY2FL]

While there may be other reasons for hyperkalemia, our FIRST line of defense has to be diet.
If you are compliant with minimizing your K+ intake and you STILL are showing high numbers,
you need to be diligent with your Doctors and dietitians to help you find the reason.
Way to stand your ground Ken! Doc's are only human, and can't have all the info. At that moment, YOU were
INDEED the "bloody doctor." You made him/her listen, and admit that he didn't have all the
answers in this particular situation...Bravo.
But I digress....
Back to Potassium. Let's put it simply...mess with K+ and it could be "GAME OVER"
So be COMPLIANT...be DILIGENT...recognize your SYMPTOMS...and try to keep
within the acceptable limits. Every patient responds to Potassium differently and to
varying degrees...maybe you don't get nauseous at a 7.0 level...that doesn't mean it's
safe for you to maintain that level. The limits are set for your health and safety.

[Panda_9]

Im not on any medications for BP. I am very strict with my diet in relation to potassium whilst I am on the shorter dialysis. I get so strict, I end up either not eating, or just having some crackers or toast as a meal. I have come to learn that the amount of potassium the dietition said I could have in a day, is too much for me. If I stick to less then that, I should be ok. However, there have been times where there is no apparent reason for the high K level. All it has been bought down to is the rebound effect as a result of short dialysis. Thankfully I am now on nocturnal and my potassium has been excellent. Only had a couple of episodes of going to A&E which was only due to the inability to dialyse at home due to machine problems. I am back on short dialysis at the moment, with one run overnight on the weekends, as I am swapping over to Fresenius.

The symptoms of high or low K that you may experience include, weakness in the limbs, irregular pulse, abdominal cramping, nausea, and diahorrea. Personally, I first get the weakness in my calf muscles and forearms. At that point I go straight to emergency. When my level was  6.8, I also started to twitch, shake, and felt vauge. If you feel any of these signs, go to emergency immediately or call an ambulance. Make sure you tell them you think your potassium may be high/low, as it helps them to quickly find what the problem is without having to guess. Dont put it off, dont think they will think you are silly, as if you dont seek help you will have a heart attack and it is very unlikely that you will be able to be revived. I have seen one young lass who was revived, think her level was 8, and they told her it was a miracle that she was alive.

[kitkatz]

Get your meds checked regularly.  I know the Hectorol I was on would increase calcium.  Read over the drug materials they give you with each new prescription from the pharmacy.  It can save you time and money if you know what the interactions might look like.

[Panda_9]

Im on mostly vitamins and minerals plus the aranesp, aspirin and omeprazole. I always look up new medications and if Im unsure I ask the pharmacist. The meds Im on now, are pretty much what most nocturnal Dx patients are on. 

[Rerun]

My Potassium was high (6.1) so they put me on 1K.  I had a fit because I will adjust my diet.  No one told me they put me on 1K I caught her doing it.  So, they said they would test my blood the next dialysis session.  They didn't.  Then it was a Saturday.  So I insisted on Tuesday and they did.  I asked for the results on Thursday and they didn't have them.  I called on Friday and they said they would call me back and they didn't.  So, Today, I asked for my results!  THEY LOST THE BLOOD SAMPLE AND IT NEVER GOT TO THE LAB.      

[Panda_9]

If your potassium is over 6 its best to use a 1K to get the level down, otherwise it could just go up too much again before the next dialysis, unless you dont eat much. For me to not eat much means having a few bits of honey on toast, and maybe some sort of protein.

[Rerun]

If your potassium is over 6 its best to use a 1K to get the level down, otherwise it could just go up too much again before the next dialysis, unless you dont eat much. For me to not eat much means having a few bits of honey on toast, and maybe some sort of protein.

The clinic's protocal is to put you on 1K until the next blood lab is drawn and then see what your potassium is.  THAT is way too long to be on 1K.  That is up to 9 treatments!! 

[BigSky]

If you K is high double check your diet.  It is weird but one brand of food maybe high in K while the same food made by someone else is actually low in K.   If eating foods specially marketed as "low sodium" do a double check to make sure they only reduced or eliminated salt.  Many times they replace the salt with potassium chloride.

Another thing to check is if you are taking any herbal supplements, especially anything for weight loss as many contain herbal ingredients that are high in K.

[Panda_9]

Shit Rerun, that is just stupid!! I guess they dont consider it could just be a one off high K level 
Im on a 1.12K on nocturnal and to my surprise my K levels have been excellent (except for now coz im in centre), and I can eat tomato and bananas finally. I went back in centre for a break but now Im being re-trained to take home a fresenius, and with the worry about high K, Im ready to go back home already.
Bigsky, trust me I have double and triple checked my diet. If I want my levels to stay normal in between conventional treatments I just cant eat much. I have very minimal fruit and vegetables and fill up on bread and crackers (bit of meat or cheese, lettuce, cucumber, onion). Doesnt take much to put me over.

[Zach]

I have double and triple checked my diet. If I want my levels to stay normal in between conventional treatments I just cant eat much. I have very minimal fruit and vegetables and fill up on bread and crackers (bit of meat or cheese, lettuce, cucumber, onion). Doesnt take much to put me over.

You'd be surprised with what foods can be high in potassium, including lettuce, if you eat a couple of large salads a day.

[Rerun]

I have finally decided to give up MILK.  I was insistant on drinking (savoring......) a cup a day.  It would start with a cup in the morning and then.... a slurp at noon and maybe a taste at dinner........ so NO MORE MILK!!

[angela515]

I have finally decided to give up MILK.  I was insistant on drinking (savoring......) a cup a day.  It would start with a cup in the morning and then.... a slurp at noon and maybe a taste at dinner........ so NO MORE MILK!!

I absolutely LOVE milk also Rerun... so I feel your pain. I had to stop having sips here and there and a cup at dinner and such because I still cannot get my phosphorus lowered. Lucky for me, my potassium is usually always low on PD so I can eat and drink stuff high in K, just not stuff high in K AND phosphorus. 

[angieskidney]

The symptoms of high or low K that you may experience include:
[li]weakness in the limbs[/li]
[li]irregular pulse[/li]
[li]abdominal cramping[/li]
[li]nausea[/li]
[li]and diahorrea[/li]
[/list]

Personally, I first get the weakness in my calf muscles and forearms. At that point I go straight to emergency. When my level was  6.8, I also started to twitch, shake, and felt vauge. If you feel any of these signs, go to emergency immediately or call an ambulance. Make sure you tell them you think your potassium may be high/low, as it helps them to quickly find what the problem is without having to guess.

Thanks for that! 

If you K is high double check your diet. It is weird but one brand of food maybe high in K while the same food made by someone else is actually low in K. If eating foods specially marketed as "low sodium" do a double check to make sure they only reduced or eliminated salt. Many times they replace the salt with potassium chloride.

Another thing to check is if you are taking any herbal supplements, especially anything for weight loss as many contain herbal ingredients that are high in K.

So true! Did you know this is true about Mrs.Dash??

I have finally decided to give up MILK. I was insistant on drinking (savoring......) a cup a day. It would start with a cup in the morning and then.... a slurp at noon and maybe a taste at dinner........ so NO MORE MILK!!

Oh Rerun I feel for ya!  But don't give up all hope! I had to give it up for a few years now and guess what? This month my dietitian said I can actually start having a cup again because my Phosphate & Potassium has been good the last 3 months!! 

[BigSky]

So true! Did you know this is true about Mrs.Dash??

As to Mrs. Dash seasoning blends specifically they are actually very low in potassium,  roughly 10 mg per 1/4 tsp serving.  The Mrs. Dash marinades do add some potassium mixture to the products but they are also pretty low in potassium.



http://www.mrsdash.com/MDProducts/products_sb.cfm

The site shows the many blends they have.  Just click on the blend to see it nutritional information.

[angieskidney]

Were they always low or did they used to be high back in the early 90's?

I remember at one time I was told to watch out for their content.

It seems they are now safe??