Living with High Potassium (Hyperkalemia): Stories and Advice

Have you ever heard of the saying "too much of a good thing"? When it comes to potassium, this statement couldn't be more accurate. Your body needs potassium–without it, your heart, muscles, and nerves wouldn't work correctly. But just like anything in life, too much of it can be harmful. High potassium or hyperkalemia is a dangerous condition that can cause serious heart problems. 

Despite the severity of high potassium, many people do not experience symptoms. Those that do often have non-specific ones like muscle weakness, numbing, and other unusual feelings. Since there are few symptoms, high potassium is usually found during a routine blood test–that’s how dialysis patient, Alex, was diagnosed.

"I was in the hospital for a blood draw. My labs came back abnormally high and they said, ‘We need to monitor this and make sure it doesn't get any worse.’ I was curious. I didn't know what it was and I didn't have any symptoms," said Alex. "I had a lot of questions and wasn't scared about it at first. As I heard more, I got more nervous."

High potassium that occurs suddenly can cause life-threatening, severe side effects like;

• Heart palpitations
• Shortness of breath
• Chest pain
• Nausea
• Vomiting
• Heart attack

Keep learning about hyperkalemia.

Treatment for high potassium depends on your medical history, diet, and medicines you take. In many cases, diet is the first line of defense. Find a kidney dietitian near you.

For former dialysis patient and transplant recipient, Pamela, diet caused high potassium and would also fix it.

"My treatment plan was to follow a kidney diet, which I wasn't doing since I didn't have a lot of education around it," said Pamela. "Then I realized how important it was to avoid high-potassium foods. I absolutely started following my diet because it was really scary getting sick from eating red potatoes. I can eat a lot of great things but I try to cut out carbs and high potassium since I have high blood pressure. I want to be very heart-healthy."

Doctors may prescribe diuretics or potassium binders to help the body get rid of excess potassium and will frequently monitor your blood for signs of improving or worsening potassium levels. 

"I had to watch the foods I eat and avoid anything high in potassium like oranges," said Alex. "I didn't have any medications but doctors monitored me with regular blood draws."

Others, like Austin a former dialysis patient and double transplant recipient, may change their dialysis modality or have more dialysis sessions to help remove excess potassium.

"They switched the dialysis I was on to help bring down my potassium. My diet also had to change," said Austin. "I couldn't eat as many foods that were high in potassium like bananas, apples, and apple juice. As a two-time kidney transplant recipient, I have a healthy kidney that removes the potassium now but I won't drink excess sports drinks which caused the high potassium to begin with." 

Get a list of 40 low-potassium fruits and vegetables. 

Living with high potassium and kidney disease can be difficult, but your healthcare team is there to help. Learn how to work with your healthcare provider to make decisions for your kidney care.

"When dealing with high potassium it's really important to stay in communication with your care team and ask the right questions. There is no such thing as a stupid question in regard to your care," said Alex. "Ask questions about your lab values–anything from potassium to electrolytes or related to kidney disease in general. It's important that you continue to advocate for yourself."

For those with a kidney transplant, continue paying attention to your diet and getting regular checkups.

"Post-transplant, you want to continue to be smart and think smart when it comes to meal planning. Just because you have a healthy transplant doesn't mean you should eat whatever you want because that can still lead to high blood pressure and diabetes which can lead to kidney failure," said Austin. "I recommend that all transplant recipients continue to monitor their potassium even if you do have a healthy transplant so you don't have to restart dialysis."

Learn how to read your lab values. 

Do you have a unique or inspiring story about your experience with a kidney transplant, living donation, or kidney disease? Let’s talk about it! Your story may be the one that gives someone hope.