Living with Chronic Kidney Disease: What Every Patient Should Know

 This article summarizes the most essential and up-to-date scientific information about chronic kidney disease (CKD) that every patient and their loved ones should be aware of. The following questions and answers are based on the authoritative textbook Chronic Kidney Disease, Dialysis, and Transplantation: A Companion to Brenner and Rector’s The Kidney (2018).

This publication was developed by leading nephrology experts—Jonathan Himmelfarb, MD, Professor of Medicine, Director of the Kidney Research Institute and Co-Director of the Center for Dialysis Innovation at the University of Washington, and T. Alp Ikizler, MD, Director of the Division of Nephrology and Chair in Vascular Biology at Vanderbilt University Medical Center.

Together with their team, the authors provide a comprehensive scientific overview of the causes, development, diagnosis, treatment, and social relevance of CKD, based on the most recent clinical and epidemiological data.

“The most important step in combating chronic kidney disease is recognizing it early—because even at advanced stages, half of all patients don’t realize they have it.”

What the Experts Say

CKD is a growing global health issue with significant public health consequences. It affects millions of people worldwide and often progresses silently in its early stages. The modern scientific and medical communities agree on the need for better early detection, a unified classification system, and active prevention and treatment strategies. Below are five selected expert insights and scientific summaries from leading nephrologists that offer the most current and accessible information for patients, families, and the general public.

1. What is chronic kidney disease, and how is it defined?

“CKD is defined as abnormalities of kidney structure or function, present for >3 months, with implications for health. The 2012 Kidney Disease: Improving Global Outcomes (KDIGO) group provides a clear CKD definition... The key elements of this definition include chronicity (>3 months), presence of kidney damage, decreased GFR, and implications for health.”

Explanation: CKD isn’t just reduced kidney function. It includes long-term (lasting more than 3 months) structural or functional changes in the kidneys that have consequences for your overall health. This means that if you have evidence of kidney damage or a persistently reduced glomerular filtration rate (GFR), you likely have CKD.

2. Why is a unified CKD staging system so important?

“The 2002 KDOQI guidelines defined a five-stage system for classification of CKD based on GFR and the 2012 KDIGO guidelines updated this staging to include the cause of CKD and the degree of albuminuria (staging by cause, GFR, and albuminuria [CGA]). The guidelines reemphasized staging by cause of CKD to remind clinicians that CKD is not a diagnosis in itself and that determination of cause is important for prognosis and treatment.”

Explanation: CKD staging is based on three key components: the cause of the disease, the degree of kidney function (measured by GFR), and the amount of protein in the urine (albuminuria). This allows for a more accurate assessment of risk and the right treatment strategy, emphasizing that a CKD diagnosis should always include identification of the underlying cause.

3. What are the strengths and limitations of the current CKD diagnostic and monitoring system?

“The KDOQI classification system for CKD has been widely adopted. Its operational simplicity ... allowed a great expansion of CKD research leading to increased recognition of CKD as a major health issue... There is widespread agreement that CKD classification has raised awareness of the full spectrum of CKD and its wide range of complications. ... The challenge and controversy is that increased awareness is also pointing a brighter spotlight on gaps in the knowledge base, particularly with regard to efficacy, cost-effectiveness, and thresholds for interventions.”

Explanation: The standardized CKD criteria have made early detection and treatment more effective. At the same time, they raise new questions—such as when to refer patients to a nephrologist, which treatments are most effective, and whether early diagnosis always leads to better outcomes.

4. What are the main causes of CKD, and why is identifying the cause important?

“Cause of CKD is now formally a part of the CKD staging system to acknowledge the importance of etiology in treatment. However, the most common assigned causes are diabetes and hypertension. In both conditions, the precise pathogenesis and factors leading to more rapid progression of disease are not fully understood. ... Efforts to better understand CKD etiology at the molecular and genetic basis could be transformative if they led to new effective treatments possibly targeted to specific subpopulations of patients.”

Explanation: Diabetes and high blood pressure are the leading causes of CKD. Identifying the specific cause is important because different causes may require different treatment approaches and have different prognoses. Molecular and genetic research may lead to personalized therapies in the future.

5. How common is CKD, and what is its social cost?

“The overall prevalence of CKD in adults in the United States in 1996 to 2006 was 11.5% ... which translates to 23.2 million people in the United States with CKD. ... European CKD Prevalence: Studies of CKD burden in Europe ... support a high prevalence of CKD similar to that of the United States.”

Explanation: CKD is highly prevalent—affecting between 10% and 15% of the adult population in both the U.S. and Europe. This high frequency places a significant social, health, and economic burden, as advanced stages often require dialysis or kidney transplantation, and even early stages increase cardiovascular risk.

Questions & Answers

1. Is it possible to have CKD without knowing it? What does the data say about CKD awareness?

Answer: Yes, it is possible. According to the scientific literature:

“Overall, only approximately 10% of NHANES participants with CKD reported awareness of having weak or failing kidneys; even at stage G4 CKD, this rate is <50%...”

Explanation: Most patients are unaware they have CKD until it has significantly progressed. Even at more advanced stages (such as stage G4), fewer than half of individuals know they have a serious kidney problem. This highlights the importance of screening among high-risk groups.

2. What are the risk factors for developing CKD, and who is most affected?

Answer:

“The most common assigned causes are diabetes and hypertension... In fact, the decreasing prevalence of albuminuria was observed only among adults younger than 65 years of age and non-Hispanic whites, where medication use was higher and risk factor control was better...”

Explanation: People with diabetes and high blood pressure are at the highest risk. Older adults (especially those over 60–65), individuals with diabetes, and certain racial and ethnic groups (such as African Americans) are disproportionately affected. Managing blood pressure and blood sugar is critically important.

3. What do the different CKD stages mean, and should I worry if I’m in an early stage?

Answer:

“The guidelines also emphasize the use of albuminuria over proteinuria... The guidelines recognized that the use of only three categories for albuminuria may represent oversimplification and specialized clinical nephrology settings may need to further subdivide A3 albuminuria (>300 mg/d) into further subcategories.”

Explanation: CKD has five stages, and even early stages can carry increased risks—particularly for cardiovascular complications. Your stage depends on kidney function (estimated GFR) and the level of protein in your urine (albuminuria). Even mild declines in kidney function should be closely monitored and managed.

4. Will my disease inevitably progress to dialysis or a kidney transplant?

Answer:

“However, it has also clearly pointed out that a large number of individuals meeting the CKD definition, particularly among many older individuals, will never require dialysis or transplantation. Some fear that these individuals may undergo unnecessary diagnostic testing, whereas others suggest the potential benefit of alerting physicians to optimize existing therapies and avoiding nephrotoxic medications.”

Explanation: No, many people with CKD—especially older adults—will never reach kidney failure or require dialysis or a transplant. The key is regular monitoring and optimized treatment to prevent disease progression.

5. What can I do to slow the progression of CKD and reduce the risk of complications?

Answer:

“This suggests that more aggressive treatment of diabetes and CKD risk factors may be leading to the lower prevalence of albuminuria among individuals with diabetes. ... where medication use was higher and risk factor control was better.” “The 2012 KDIGO guidelines clarify nephrology referral is only needed for progressive disease, GFR <30 mL/min/1.73 m², albuminuria >300 mg/g, or other refractory conditions.”

Explanation: Strict control of diabetes, blood pressure, and adherence to prescribed medications are the most important factors. Regular monitoring of kidney function and urine protein levels is essential. Not every patient needs a nephrologist—referral is typically reserved for more advanced or complicated cases.

Conclusion

Chronic kidney disease remains one of the major medical and social challenges of our time. Understanding the risk factors, early signs, and available options for prevention and management is vital for every patient with this diagnosis.

The information presented above is based on the scientific work of Professors Himmelfarb and Ikizler, who have synthesized the expertise of dozens of specialists from leading nephrology centers worldwide. We hope that this evidence-based overview will help each patient gain a clearer understanding of their condition and make informed decisions about their future care and lifestyle.

Source: Himmelfarb J., Ikizler T. A. (2018). Chronic Kidney Disease, Dialysis, and Transplantation: A Companion to Brenner and Rector’s The Kidney. Fourth Edition. Elsevier. https://www.sciencedirect.com/book/9780323529785/chronic-kidney-disease-dialysis-and-transplantation