Yesterday I went and had my labs done. I did not get them back, so I had no idea of what was happening. At 6pm, I get a call from the on-call doctor from the nephrology practice I use. I could barely understand his English and he had a screaming child behind him as he was calling from home. He ordered me to go to the Ed immediately. He said my potassium was 6.3. He also said they would do an emergency cath for dialysis. I told him no way on that, and he got belligerent with me, talking about how it will affect his numbers. I said I would go to the smaller hospital and off we went. OMG, what a circus. For a Tuesday evening, the room was crowded. Fortunately, they got me back to a private room in obs pretty quickly, like an hour and half. The put it a line and took blood, even though I had just had blood drawn. Took another hour or so to get a PA to come and speak with me.
In the bay across from me was an addict who was going through withdrawal. She was puking her brains out and screaming. So pleasant. They finally medicated her, even with a medication protocol, which means no narcotics, and sent her stoned butt home. So sad. She also is on dialysis, and I guess that was she was in withdrawal. In the bay next to me was another mental patient who was exposing himself and screaming every time he urinated. To say the lease, my blood pressure systolic number was ridiculously high from the stress.
At 10:45 pm, the PA came in finally, looked at the labs they had done in the hospital and said he had good news. My potassium was actually 4.7, not 6.3. He said that the labs do have this happen, like it was no big deal. Of course, I was relieved but also furious. ALL of my lab numbers done in the hospital were better than the ones I had drawn in the morning at the lab. What does this say about our medical system? They could have slapped me into dialysis and gave me a medication that could have caused brain damage. The thing is my potassium usually runs high like over 5.2 for the last couple of years because of eating Plant based and I am on a BP med that raises potassium. However, because I cannot get good fresh lettuce, we are not eating salads every night. So it is possible it could have dropped. So scary to think what could have happened.
The good news is that although there is a slight, and I do mean slight, decline in some of my numbers, I am still hanging in there without dialysis. It is now over four years. Even the PA said I was still pretty stable. Stage 5 but doing ok. This was my Christmas miracle.
Hope everyone has a blessed Holiday, however you celebrate.
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Bassetmommer
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I’m so sorry you went through that horrible experience and scare. It is hard to trust our medical system. Prayers & good wishes
Blessings to all you folks 🙏🏻
Wow! Good grief what an experience! I am so sorry you had to go through all of that!
I live in Canada, Ontario and our emergency rooms are swamped too. I have been lucky not to have to use them for a while but I can relate because I have been in a similar situation and boy, it sucks!
How were your labs so wrong?
I get you on the lettuce thing! I always have a big salad every day but the price of lettuce has skyrocketed here too! My 3 pack of Romaine which used to cost about $4 is now $12!
This week my grocery store had it for $3.99, and people were scooping it up like crazy! I bought 3 packs! We will be eating many salads over the next week!
Again, sorry you had to go through that and take it easy today. The word is the price of lettuce will be coming down in January when crops come from Florida and Georgia. I'll believe it when I see it!
HI, The price of lettuce is not even the issue. I cannot find my leaf lettuce. I do not eat romaine as it higher on potassium. We do not even have iceberg, except for a few heads and they are over priced empty balls of garbage. The big Wegmans chain here wants people to buy their prepackage crap and even washing it does not get rid of the solutions they put on it to keep it green. So bad for you. Thanks for telling me there is lettuce hope in 2023.
My potassium is always ok, and I do love romaine, but lately it has been "can we find any lettuce at all!" Switched to cabbage for the crunch for the past month or so. I want to grow my own now!
Glad you survived your latest experience with doctors and hospitals! You're a trooper! My hubby landed in an emergency room with an alcoholic next door. My poor guy, who was in a-fib at the time, was completely ignored while the alcoholic got all the attention. So we completely relate! It's really frustrating. Keep on staying off dialysis!
“and he got belligerent with me, talking about how it will affect his numbers.” His numbers? Am I understanding this correctly…he’s worried about “his” numbers…and not you!?
Great example of how we must be our own advocate. So glad you said no when you needed to and that everything turned out well.
Yes, numbers,..... they all have this issue that if a patient "fails" they lose $$ reimbursement. Hospitals, providers, agencies like I worked for all are very number focused. I do not know if people know this but there is a rating system that CMS (Medicare, Medicaid) has that will give you a rating of al the above. It very informative. Here is one of them qcor.cms.gov/hosp_cop/Hospi...
This is about Medicare. Medicaid is a state run program that gets federal funding. Each state has their own quality ratings that may differ. You'll see phrases like Medicare/Medicaid certified provider which just means the state has less responsibility for certifying the provider since Medicare already did.
That is scary. But so glad the day ended on a better note 🙏
Have you tried kale- it’s so much better than spinach and others for keeping potassium in in check while giving you the benefits of solid greens. Learned this in the FB group Natural Kidney Journey (along with a lot else).
And any chance of switching the potassium sparring BP meds with any others? Of course this is not as easy as replacing kale with spinach.
Thanks for the info. I do not, cannot stand, kale and it is much higher in potassium than green and red leaf lettuce. I am super careful with what I consume. I also do not eat spinach in any form. Very Merry back to you.
Sure of course 🙏 I however used the puréed spinach for making oats Tortillas. Replacing spinach with puréed kale worked well and reduced the potassium relative to spinach.
Wow, so sorry you went thru that! Labs make mistakes! Once they actually switched my results with another patient who was diabetic! My Dr immediately said "these are not your results!" Had to have labs redrawn. You said a b/p med raises your potassium, is that the amlodipine you are on?
So sorry this happened to you! You definitely have to be your own advocate. I’m also on irbesarten and I had no idea it raises potassium. I’m also mostly plant based but I’m fortunate that so far my potassium has been in line. Why do they put people with stage 5 CKD on meds that raise potassium? My brother has the same genetic ckd as me and takes a powder that’s a potassium blocker with meals. Perhaps that could be something to consider? Glad everything worked out in the end.
I was on the binder once. It was like drinking the sludge at the bottom of a river. I will have to see where my potassium falls next lab as for now it is perfectly normal.
What are you going to do if it gets to that point? Kidneys progressively fail, no matter what you do. Sad but it is the truth. I am with you though. I will do everything and anything I can to stay off dialysis until there is no other choice accept hospice. Don't want that either.
Yikes, sorry you had to go through all that. Glad it all turned out OK. I almost had a similar experience a year ago. I had done non-fasting labs early in the morning, like 9am. About midnight I got a call from another doctor in my doctor's practice telling me to go to the ER immediately and tell them my potassium was high. It was 6+ something. Anyway, at midnight, being woke up by ll phone and cell phone by someone i didn't know I decided that if it was going to kill me it would have done so by then. I did go in the next day to the dr office and they gave me some Lokelma to help it go down. I control it now by not eating high potassium foods at the same time.
That's kind of what I thought. I confess though my EGFR was around 45 then so maybe not in as much danger as you. Thinking about it now how would high potassium lead to immediate dialysis?
They would be removing toxins including some, but not all the potassium. Not a great fix actually. This on call doctor was just following protocol and did not know me. I would not have allowed it.
Glad to hear it was all just a mistake and also thankfully you declined to get dialysis can't imagine hearing those words. I had a similar experience back in June, but all my levels were off the wall had been with my nephrologist she always ordered bloodwork on every visit. Had a call to go directly back to the ER, to get a blood transfusion, and I was at a risk of going into cardiac arrest. I was hospitalized for a week, but glad you're doing much better hope it continues that way.
OMG, thank goodness it turned out well. It's insane how we have to rely on these labs that our lives appear to depend on. Although it was good that you were alerted quickly to a possible danger, but not good that the kidney doctor was so impulsive. Take care and hope you find some good lettuce soon. There's nothing like a nice fresh, green salad. My preference is butter lettuce which isn't always available even here in Florida.
I still am shaking my head over the condition of the ER. The ER staff go thru a lot. God bless them.
Oh thanks so much. So sorry we have been out of touch. Hope is well in your world. Send me an update when you can.
J
OMG! Bassetmommer! So sorry you had to go through that. In 2017 when I was in the hospital for 3 weeks, I had a couple nasty room mates so the staff moved me several times and I finally ended up in a private room with a nice view out the window. I too have a struggle with keeping my potassium in check. I did actually reach 5.8 after one of my labs but was able to get it back down by changing diet. I still hang around 5.2 most of the time. It is interesting how lab values can vary that much between institutions. I wonder if it has to do with the machines that they use?
Gotta love lab mistakes. I've had the potassium scare but managed to not go to the ER. Then when I was going through all the initial transplant testing one of my labs showed positive for cocaine. I don't and never had used cocaine. I had a different lab, mine, re do the test and it was negative. They ever redid it and it was negative. Could have cost me the ability to get a transplant. ER's are the absolute worst place to be in.
Yeah I was pretty livid about it. I had three different labs do the repeat cause I knew they were wrong but they were adamant it wasn't "their" lab's mistake. Well until I provided all of my supporting documentation regarding lab mistakes, etc. My GP even found a study on the topic and how about 50% of the positives are false positives when doing drug screening.
So glad that all turned out OK for you!! That is a scary experience that I hope never happens to you again. I think this is a lesson for all on HealthUnlocked. Do your homework and learn all you can about CKD, etc. Then when something like this happens you are knowledgeable and can be your own advocate. It would seem that not all medical "experts" are there for you?!@#$
Merry Christmas to you and your family! Hope that 2023 is a great year for all!
You are so correct. We need to teach patients of all chronic illnesses how to advocate. Providers actually like a well-educated patient. I personally endorse obtaining a GD. (Google Doctorate, which means learning what is junk out there and what is factual, evidence-based literature). Merry Christmas to you and here's to a great 2023 for all of us!
Well done Bassetmommer. Great that you were able to advocate for yourself so well.
My worry is if one is really ill and passed out and cannot speak up for oneself. I have had to fight off two med technicians who were very insistent on wanting to use contrast medium. Another problem is any prescriptions your general practioner or any other doctor bar a nephrologist gives one. It is such a pity, I feel sorry for people who are not in a position to speak up for themselves or get second opinions.
Wow, what rollercoaster of events! So glad it all turned out ok for you. You really need to be on top of things and ask questions as they like to sometimes do the quick fix. Best of luck to you in the future and Happy Holidays!
oh goodness what a nightmare you went through I’m so glad all came out good in the long run glad you are hanging in without dialysis I’m in stage five to but after the holiday in January my neph said time my numbers are down . Glad you don’t have to go that route yet.
Hi Bassetmommer, I too am glad you are home and doing well. What a nightmare experience you had!
I really like your idea of obtaining a GD. There is so much information available but it is hard to know which information can be relied upon. If you read information by 4 different medical experts you are likely to get 4 different opinions. And that is made even more confusing by the different reactions patients have to the same treatment. While a given treatment may work wonders for one person another patient given the same treatment may have a serious negative reaction. We have to learn to listen to our bodies and be guided by what is best for us based on our past experiences.
Thanks for all the common sense advice you provide to all of us, and happy holidays to all.
Yes, Bassetmommer, a Christmas miracle for you, due to you.
Like you wrote:
"They could have slapped me into dialysis and gave me a medication that could have caused brain damage. "
Glad you were assertive and could avert another medical system disaster.
I believe these medical errors are happening wherever we may be in the world.
Thank you for providing information on this forum, along with empathy, so we all can benefit.
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