Donna’s Journey: Living with Chronic Kidney Disease and High Potassium
Potassium supports proper muscle function, including the heart.1 When kidneys don't filter properly, potassium can rise in the blood.1 This is called hyperkalemia, also known as high potassium.2
Hyperkalemia is often associated with cardiovascular, renal and metabolic diseases like chronic kidney disease (CKD), heart failure, hypertension, and diabetes but can also be caused by medicines used to treat these conditions called renin-angiotensin-aldosterone system inhibitors (RAASi).3 Although hyperkalemia is estimated to affect approximately 3.7 million people living with CKD and/or heart failure in the United States,3 it is often underdiagnosed as many with the condition show only mild or no symptoms.1
The Importance of Monitoring Potassium Levels
It’s important for those at risk of hyperkalemia to be aware of symptoms that may indicate very high potassium levels in the blood, which may include1:
- Irregular heartbeats, also known as cardiac arrhythmia
- Muscle weakness
- Numbness or tingling
- Nausea or vomiting
Some symptoms of hyperkalemia may be mild and easily dismissed.1
Routine blood tests are the only way to consistently monitor potassium levels and ensure they remain within a normal range, between 3.5 and 5.0 mEq/L.1 If left untreated, hyperkalemia can become severe and may lead to serious health issues,2 which is why routine monitoring and open dialogue with healthcare providers are essential parts of long-term disease management. 1
Donna’s Story
Donna was diagnosed with Alport Syndrome, a genetic disease that damages blood vessels in kidneys and can sometimes, like in Donna’s case, cause CKD and eventually kidney failure.4 On her way to work while waiting for a kidney transplant, Donna received an unexpected phone call from her nurse.
“My nurse called me and she asked, ‘Donna, your potassium is super high. Where are you?’ After telling her I was driving on the freeway, she directed me to get off and gave me instructions to lower my potassium. I asked her what would happen if my potassium levels didn’t go down, to which she replied, ‘You could have a heart attack.’ I was shocked. No one had ever told me to watch my potassium, or that potassium levels could get that high because of kidney problems.”
That call prompted Donna to learn what her potassium levels mean and how to work with her care team. Today, 20 years after her transplant, Donna is not only a survivor but an advocate and inspiration to her family, colleagues, and the broader patient community. Reflecting on her journey, she points to a couple of tools that made a meaningful difference, which she believes can help guide and empower other patients navigating kidney disease and hyperkalemia.
Educating Yourself and Building a Support System
Donna has remained committed to learning as much as she can about her health since her initial diagnosis. “I look at things like my creatine and potassium levels regularly, and do my own research to be as educated as possible about things I am living with to help myself and those around me.”
Donna also makes it a priority to talk openly about her condition with those around her, including her daughter who is also living with Alport Syndrome.
“As an educator, I get to frequent college campuses where I’m sometimes introduced to a student who needs a kidney transplant. In a way, I get to become a mentor for those students who are living through the same struggles I’ve endured.”
Donna’s story is one of many that highlights the real impact of high potassium. While her journey began with a rare genetic condition, high potassium also affects many people living with CKD, heart failure, diabetes, or high blood pressure.3 We invite you to tell your story and join the AstraZeneca US Patient Voices Network, a nationwide AstraZeneca program for patients and caregivers. Sharing your unique experience could help educate and inspire others.
References:
1. National Kidney Foundation. Potassium. Accessed March 6, 2026. https://www.kidney.org/kidney-topics/potassium.
2. Cleveland Clinic. Hyperkalemia (High Potassium): Symptoms & Treatment. Cleveland Clinic. Accessed March 6, 2026. https://my.clevelandclinic.org/health/diseases/15184-hyperkalemia-high-blood-potassium.
3. Betts KA, Wooley JM, Mu F, et al. The prevalence of hyperkalemia in the United States. Curr Med Res Opin. 2018;34(6):971-978.
4. National Kidney Foundation. Alport syndrome. National Kidney Foundation. Accessed March 6, 2026. https://www.kidney.org/kidney-topics/alport-syndrome.