Understanding and Managing Chronic Kidney Disease: A Comprehensive Guide for Patients

Chronic Kidney Disease (CKD) affects a significant portion of the population, with potentially severe consequences if left unmanaged. More than 1 in 7 adults in the United States may have chronic kidney disease (CKD), with higher rates in low-income and racial/ethnic minority groups. People with CKD are more likely to have heart disease and stroke - and to die early. This article aims to provide patients with a comprehensive understanding of CKD, its causes, symptoms, diagnosis, treatment options, and the importance of patient education in managing the disease and improving overall health outcomes.

What is Chronic Kidney Disease?

Chronic kidney disease (CKD) means that your kidneys are damaged and can't filter blood as they should. To understand CKD, it's essential to know the vital role kidneys play in maintaining overall health. You have two kidneys, each about the size of your fist. Their main job is to filter your blood. They remove wastes and extra water, which become urine.

The kidneys perform several crucial functions, including:

Filtering waste and toxins: The kidneys act as filters, removing waste products and toxins from the bloodstream.
Balancing fluids and electrolytes: They regulate the balance of fluids, electrolytes (such as sodium and potassium), and minerals in the body.
Controlling blood pressure: Kidneys release hormones that help regulate blood pressure.
Producing red blood cells: They produce erythropoietin (EPO), a hormone that stimulates the production of red blood cells.
Maintaining bone health: Kidneys help maintain strong bones.

When the kidneys are damaged, they cannot perform these functions effectively, leading to a buildup of waste and toxins in the body, as well as imbalances in fluids and electrolytes. This damage occurs slowly over many years. Many people don't have any symptoms until their kidney disease is very advanced.

Causes and Risk Factors of CKD

Several factors can cause or increase the risk of developing CKD. Some of these factors are unavoidable, while others are modifiable through lifestyle changes and medical management.

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Unavoidable Risk Factors:

Family history: A family history of kidney disease, such as polycystic kidney disease or autoimmune diseases like lupus or IgA nephropathy, increases the risk.
Genetic conditions: Certain genetic conditions can cause kidney defects and lead to kidney failure.
Age: The risk of CKD increases with age.

Modifiable Risk Factors:

Diabetes: Diabetes is the most common cause of kidney disease, affecting both type 1 and type 2 diabetics.
High blood pressure: Also called hypertension. Since the kidneys don't work as well to remove extra salt and water from the body, blood pressure starts to rise.
Heart disease: Heart disease and kidney disease are connected.
Obesity: Obesity can contribute to kidney damage.
Urinary tract issues: Urinary tract issues and inflammation in different parts of the kidney can lead to long-term functional decline.
Medications: Heavy or long-term use of certain medications, including common over-the-counter drugs, can damage the kidneys.
Smoking: Cigarette smoking can hurt the kidneys and make existing kidney damage worse.

Managing risk factors like diabetes and high blood pressure can help prevent or delay CKD.

Symptoms of CKD

In the early stages of CKD (stages 1-3), there are often no outward signs or symptoms. This is why regular checkups with your doctor are important. Even among those with severe CKD, 2 out of 5 are unaware that their kidneys have failed. As kidney disease progresses, the following symptoms may appear:

Nausea and vomiting
Muscle cramps
Loss of appetite
Swelling in the feet and ankles
Dry, itchy skin
Shortness of breath
Trouble sleeping
Urinating either too much or too little
Acid buildup. Also called acidosis, acid buildup happens when the kidney can't remove extra acids the body makes or you take in with the foods you eat.
Fluid retention. This could lead to leg swelling, high blood pressure or fluid in the lungs, also called pulmonary edema, which causes shortness of breath. Fluid retention usually happens in later stages of kidney disease.
High blood potassium levels. Also called hyperkalemia, this condition may happen suddenly.
Anemia.
Heart disease. With advanced kidney disease, blood vessels called arteries can become stiff and get clogged.
Weak bones.
Sexual health concerns.
Damage to the central nervous system. This could lead to trouble concentrating or personality changes.
Immune system changes.
Pericarditis.
Pregnancy complications.

It's important to note that these symptoms can also occur in other disorders, so it's essential to consult a healthcare professional for proper diagnosis.

Diagnosis of CKD

Blood and urine tests are the only way to know if you have kidney disease. Even before any symptoms appear, routine blood work can indicate the early stages of CKD. If your doctor suspects CKD, they may schedule a variety of tests, including:

Blood tests: These tests can reveal high levels of waste products in the blood, such as creatinine. The estimated glomerular filtration rate (eGFR) measures how much blood the kidneys filter each minute, recorded as milliliters per minute (mL/min). Doctors determine the stage of kidney disease using the glomerular filtration rate (GFR), a math formula using a person’s age, gender, and their serum creatinine level (identified through a blood test). Creatinine, a waste product that comes from muscle activity, is a key indicator of kidney function.
Urine tests: Urine tests can reveal abnormalities and give clues to the underlying cause of CKD. These tests look for unusual things in the urine, such as protein or tiny amounts of blood.
Imaging tests: Ultrasounds or CT scans can help assess the size, structure, and visible damage, inflammation, or stones in the kidneys.
Kidney biopsy: In some cases, a kidney biopsy may be necessary to determine the underlying cause of the kidney damage.

Stages of CKD

There are five stages of kidney disease. The stages are based on how well your kidneys are able to filter out waste from your blood. Blood and urine tests determine which stage of CKD you’re in. The stages range from very mild (stage 1) to kidney failure (stage 5). Healthcare providers determine the stage of your kidney function according to the glomerular filtration rate (GFR). Your GFR is a number based on the amount of creatinine, a waste product, found in your blood.

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The National Kidney Foundation (NKF) divided kidney disease into five stages:

Stage 1: GFR 90 or higher. Your kidneys are working well but you have signs of mild kidney damage.
Stage 2: GFR 60 to 89. Your kidneys are working well but you have more signs of mild kidney damage.
Stage 3a: GFR 45 to 59. Your kidneys aren’t working as well as they should and show mild to moderate damage. This is the most common stage. You may notice symptoms at this stage.
Stage 3b: GFR 30 to 44. Your kidneys show moderate damage and don’t work as well as they should. With the right treatment, many people can stay in this stage and never advance to stage 4.
Stage 4: GFR 15 to 29. You have very poor kidney function; your kidneys are severely damaged and close to not working.
Stage 5: GFR less than 15. Your kidneys are very close to failing or have stopped working. You may need kidney dialysis or a kidney transplant at this stage. When the kidneys no longer work at the level needed to keep a person alive, it's called end-stage kidney disease.

Treatment of CKD

Treatments cannot cure kidney disease, but they may slow kidney disease. Treatment is determined by what is causing your kidneys to not function normally. Treating the cause is key, leading to reduced complications and slowing progression of kidney disease. The goals of CKD treatment are to:

Slow down the progression of kidney damage.
Manage the symptoms and complications of CKD.
Reduce the risk of cardiovascular events.
Prepare for kidney failure, if it occurs.

Treatment options may include:

Medications:
- Medicines to lower blood pressure
- Control blood sugar
- Lower cholesterol
- Diuretics to reduce fluid and swelling
- Supplements to relieve anemia
- Statins to lower cholesterol
- Medications to protect your bones and prevent blood vessel calcification
Dietary changes: A lower-protein diet may be recommended. It reduces the amount of waste your kidneys need to filter from your blood. Whether you’re in early or late stage kidney disease, there are steps to help feel your best-including following a kidney-friendly diet and exercising.
Lifestyle modifications:
- Quit smoking
- Consuming alcohol in moderation
- If you're overweight or obese, then try to lose weight
- Staying active and getting exercise can help not only with your weight, but fatigue and stress
Dialysis: Dialysis uses a machine to filter the toxins and remove water from your body as your kidneys are no longer able to do this.
Kidney transplant: Where possible, the preferred therapy is a kidney transplant.

The Importance of Patient Education

Patient education plays a vital role in managing CKD and improving health outcomes. CKD health education is provided by nephrologists and other healthcare professionals through patient visits, online resources, support groups, and community programs. It empowers patients to make informed decisions about their health, care, and treatment options. Patient education helps improve treatment adherence, increase optimal starts, and decrease hospitalizations. In contrast, patients who lack patient education and aren’t as engaged are more likely to “crash” into dialysis and need urgent care for their untreated kidney disease before they’ve spoken with kidney specialists and developed a treatment plan.

Effective patient education should be:

Personalized: Tailored to the individual's needs, preferences, and health literacy level. Patients benefit when CKD health education is personalized and offered in manageable amounts that focus on what’s next in the process, rather than trying to explain everything all at once.
Comprehensive: Covering all aspects of CKD, including its causes, symptoms, diagnosis, treatment options, and lifestyle modifications.
Accessible: Available in multiple formats (e.g., written materials, videos, online resources) and languages to accommodate diverse learning styles and language barriers.
Ongoing: Provided continuously throughout the course of the disease to address evolving needs and challenges.
Support groups and community forums: Online and local support groups promote shared learning and real-time interaction, fostering peer support and a deeper understanding of disease management.

Resources for Patient Education

Several organizations offer valuable resources for CKD patient education, including:

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK): Offers health information for patients.
National Kidney Foundation (NKF): Offers a Quick Reference Guide on Kidney Disease Screening which features a 5-step plan for CKD evaluation and referral. The plan helps primary care physicians and clinicians know the criteria for CKD, recognize the risk factors for the disease, appropriately screen patients, classify the stage of the disease to guide testing and treatment, and implement an action plan to manage the disease and educate patients. Clinicians can refer patients to Kidney Pathways, an online resource to help patients understand their condition and steps they can take to stop it from progressing. This site uses a very brief questionnaire to help patients interact with their own lab results so they can access a custom course that walks them through important topics in plain language. The NKF also offers a free 8-week workshop Take Charge of Your Kidney Health for people with Chronic Kidney Disease who want to learn how to manage their illness and live healthier with kidney disease. Even more comprehensive information for patients is available in the A to Z Health Guide, which is available in English and Spanish.
American Kidney Fund (AKF): Offers health information for patients.
Mayo Clinic: Offers videos and information about chronic kidney disease.

Overcoming Challenges in Patient Education

One of the challenges when it comes to educating patients on CKD is the emotional toll of the disease. Many people with CKD feel overwhelmed by their diagnosis, and some patients initially react with anger, sadness, and even denial. It can be even more difficult to understand CKD health education materials and manage a chronic disease for people who are struggling to meet their basic needs and dealing with food insecurity, housing instability, lack of transportation, limited educational opportunities, and other social determinants of health (SDoH) barriers. SDoH can increase an individual’s risk of CKD, as well as worsen quality of life and disease progression for those who have CKD. In addition to combatting an overall lack of public awareness, providers frequently face challenges educating patients with limited health literacy and language barriers.

To address these challenges, healthcare professionals can:

Build trust and rapport with patients.
Address emotional concerns and provide support.
Use plain language and visual aids to explain complex concepts.
Offer culturally sensitive education materials.
Collaborate with community organizations to address social determinants of health.

In value-based care models, nephrologists can rely on additional team members to support CKD health education. These team members may include embedded renal care coordinators (RCCs), advanced practice providers (APPs), nurse care managers, social workers, renal dietitians, and non-clinical care coordinators.

Living Well with CKD

Learning you have chronic kidney disease and learning how to live with it can be a challenge. But there are lots of ways to help you to be more comfortable for longer before more drastic measures are needed. And even then, there is plenty of hope. Despite the challenges, people with CKD can live full and active lives by:

Following their treatment plan.
Making healthy lifestyle choices.
Managing their symptoms and complications.
Seeking support from healthcare professionals, family, and friends.
Staying active and getting exercise can help not only with your weight, but fatigue and stress.
If your condition allows, keep up with your routine, whether that's working, hobbies, social activities, or other things you enjoy.
It can be helpful to talk to someone you trust, a friend or relative who's good at listening. Or your doctor could also refer you to a therapist or social worker.
It can also be helpful to find a support group and connect with people going through the same thing.

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