Living with chronic kidney disease (CKD) can affect eating, drinking, energy, and daily routines. Keeping track of lab results, medications, and appointments can add more work.

Recently, we asked MyKidneyDiseaseTeam members which challenge currently has the biggest impact on their daily life. Their comments showed how food choices, fatigue, uncertainty, and ongoing medical care can affect everyday life with CKD.

More than half of respondents chose food or fluid restrictions. Almost 3 in 10 selected symptoms such as pain or fatigue. Members frequently described confusion about what to eat, while fatigue stood out as a challenge that could affect everything from socializing to household tasks.

No two experiences with CKD are the same. Your challenges may depend on your kidney function, other health conditions, and treatment. Your healthcare team can help you understand which recommendations apply to your individual situation.

Members described the challenge of keeping track of sodium, potassium, protein, fluids, and other dietary factors. Reading food labels, finding suitable meals, and balancing different dietary needs can make eating feel complicated.

Kidney-friendly eating plans are based on factors such as kidney function, lab results, medications, other health conditions, and treatment. Not everyone with CKD needs the same restrictions.

One MyKidneyDiseaseTeam member wanted more specific dietary guidance: “I have difficulty knowing what I am allowed to eat. They said lower sodium to 2,000 milligrams or less per day, drink more water, watch red meat, and get more exercise. ... How much protein do I need to eat? I am needing specifics.”

Another described the mental effort involved in everyday food choices: “I am frustrated with the food and liquid intake. I have asked my doctor … to be more specific. He provided me with a list of yes and no food/liquid as reference. ... It’s exhausting and at times confusing, at least for me.”

“I am frustrated with the food and liquid intake. ... It’s exhausting and at times confusing, at least for me.”

 

— A MyKidneyDiseaseTeam member

What May Help

If you’re unsure what you can eat or drink, ask your kidney care team for guidance based on your kidney function, lab results, and other health conditions. Reading about kidney-friendly foods and meal suggestions or diet tips from others with CKD may help you come up with additional questions to bring to your care team.

You might ask:

• What nutrients do I need to monitor?
• Do I need to limit fluids?
• What amounts are appropriate for me?

A registered dietitian who specializes in kidney disease can help you create a more specific eating plan, understand food labels, and find meals that fit your needs and preferences.

Almost 30 percent of respondents chose symptoms such as pain or fatigue as their biggest challenge. Fatigue, especially, stood out in the comments and was often described as much more than ordinary tiredness. Members also mentioned leg cramps, itchy skin, trouble concentrating, and balance problems.

CKD symptoms can worsen as the condition becomes more advanced. Some of the problems members described may be related to CKD or its complications, while others may have unrelated causes. It’s important to discuss them with your healthcare team.

One MyKidneyDiseaseTeam member explained how fatigue affected their social life and ability to maintain their home: “I don’t want to go out — too much work and ... too tired to even go. Also, I don’t invite people to my home because the fatigue has affected my housecleaning.”

“I don’t want to go out. … Too tired to even go. Also, I don’t invite people to my home because the fatigue has affected my housecleaning.”

 

— A MyKidneyDiseaseTeam member

Another described the combination of symptoms they experienced: “Leg cramps in the middle of the night, aches and pains, especially in my hips, legs, and feet. Dry, itchy skin. Just tired all the time.”

What May Help

If fatigue, pain, or other symptoms interfere with daily life, tell your kidney care team. Ask whether they could be related to kidney disease, medications, or another health condition, and whether testing or treatment might help.

Keeping track of when symptoms occur and how they affect your activities may help you describe them at appointments.

Beyond food restrictions and physical symptoms, members described the emotional strain of living with CKD. Changing lab results, uncertainty about disease progression, and managing several health conditions at once can leave people feeling frustrated, depressed, or anxious.

One MyKidneyDiseaseTeam member described how trying to balance dietary needs for kidney disease and osteoporosis (bone thinning) became overwhelming: “Protein and calcium restrictions, extreme portion control caused catastrophic weight loss. It’s difficult to balance dietary issues for [osteoporosis] and CKD. ... I’m exhausted, depressed, and overwhelmed by it all.”

“It’s difficult to balance dietary issues for [osteoporosis] and CKD. ... I’m exhausted, depressed, and overwhelmed by it all.”

 

— A MyKidneyDiseaseTeam member

Another member described the worries that came with a new diagnosis: “Just finding out. … It’s really everything. … My mind sometimes takes me places I haven’t even been invited to yet.”

What May Help

If you’re worried about changes in your kidney function or what the future may hold, understanding your individual situation may help you feel more calm and prepared. Ask your kidney care team to explain:

• What your test results mean
• What they’re monitoring
• What changes might affect your care plan

If the ongoing stress of CKD is affecting your mood or daily life, consider asking about counseling or support groups. Connecting with others who understand the challenges of kidney disease may also help you feel less alone.

Only 4.8 percent of respondents chose keeping up with treatments, medications, or appointments as their biggest challenge. Still, members described the ongoing work of managing kidney disease, from regular blood tests and medication routines to coordinating doctors and understanding changes in their health.

One MyKidneyDiseaseTeam member described feeling overwhelmed with multiple health issues and unclear guidance from their primary care provider (PCP): “My numbers were changing for the worse, and all my PCP would say is ‘Typical for you.’ … There’s a lot more I’m trying to swallow and digest right now. I wish I wasn’t alone and had someone with me to absorb all the info.”

“My numbers were changing for the worse, and all my PCP would say is ‘Typical for you.’ … I wish I wasn’t alone and had someone with me to absorb all the info.”

 

— A MyKidneyDiseaseTeam member

Another member described the challenge of coordinating care for several health conditions: “I see my endocrinologist in … September for a routine follow-up about the thyroid cancer and my nephrologist in … October. I will have comprehensive blood tests … to evaluate everything. Needless to say, keeping everything on track is a little difficult, tiring, and a pain in the you-know-what!”

What May Help

If keeping track of appointments, medications, and test results feels overwhelming, ask your healthcare team about ways to simplify the process. Bringing a trusted friend or family member to appointments, taking notes, or requesting a written care plan may help.

If you see several specialists, ask who is coordinating your care and how your doctors share information. A pharmacist can help review medications, while a social worker or patient navigator may be able to assist with transportation, insurance questions, or other barriers to care.