By Susan Witzel Kreuter, MSW, LCSW

What can you do when you are told you have chronic kidney disease (CKD)? Withdrawing from family and friends, so as not to upset or burden them, may be your initial response. However, the best method is to become an informed participant in the system. What do I mean by this? Ask questions, request educational literature, and locate local support or educational groups. Do not be afraid to request referrals to other professionals who can help you, such as a dietitian. A dietitian will help you understand how the food you eat can keep you healthier, help you feel better, and delay disease progression.

Yes, the disease has a process, but it can be delayed by a proper diet, exercise and a positive attitude. This is where a social worker can be beneficial. They offer assistance with educational information, including information about insurance benefits (COBRA, Medicare, Medicaid and HMOs). A social worker can explain financial programs, such as Social Security, disability, and supplemental security income, to alleviate worries about financial stress.

A team approach is best, so be certain to include your doctor and nurse in helping you understand underlying causes of your disease. Each cause has medications or treatments for which you must take responsibility. If you have diabetes, be certain to ask for help, if needed. Or test your blood sugar levels yourself, as recommended by your physician. If you have high blood pressure, take your medications as prescribed. Be aware of factors that can raise your blood pressure.

Speak with your doctor about exercises you may be willing to participate in, such as walking, jogging, aerobic exercise or anything else you enjoy. Choose something you will not just think about doing, but rather something you will start and continue doing. Try to find a friend, neighbor, family or church member with whom you would enjoy sharing the activity.

Get out and be with people! Share your diagnosis with those you care for and those who care for you. Share literature you receive with them. Search the Internet for information, or ask someone you know to help you with that effort. If you are uncertain who to ask, go to your local library and ask for help. The librarian can assist you in searching for literature in the library itself or on the Internet. There are many organizations with wonderful informative programs for CKD patients. Ask for referrals from your physician or pick up a telephone and call the organizations yourself.

The American Association of Kidney Patients (AAKP) has a wonderful program, titled “Kidney Care: Finding Your Strength.” This free educational program educates individuals about the basics of kidney disease and proper kidney care. Topics include what the kidneys are, what they do, and how to care for them. The program also addresses managing conditions that may lead to CKD, diet management, and side effects and challenges CKD patients face, such as anemia.

These programs last approximately three hours and feature presentations given by healthcare professionals. In addition, attendees have the opportunity to ask questions in an open forum. Free anemia screenings are also provided. This year, AAKP will host “Finding Your Strength” programs in 18 cities nationwide. For more information, please call (800) 749-2257 or visit click here.

The National Kidney Foundation (NKF) has the Kidney Early Evaluation Program (KEEP). KEEP is a free health-screening program offered by NKF for individuals at an increased risk of developing kidney disease. Goals of the KEEP program are to raise awareness about kidney disease (especially among high-risk individuals), provide free testing for people at increased risk for kidney disease, encourage people at risk to visit a doctor and follow the recommended treatment plan, provide educational information so at-risk individuals can prevent or delay kidney damage, provide doctor referrals for follow-up care (if needed), and provide ongoing information and support.

You should attend a KEEP screening if you are 18 years or older and have one or more of the following; kidney disease, diabetes, high blood pressure, or are a family member of someone with diabetes, high blood pressure or kidney disease.

During the screening, one or more tests may be performed, including blood pressure and weight measurements. In addition, there may be blood and urine tests to detect diabetes or kidney disease, such as a blood glucose check; hemoglobin check; urine dipstick test for microalbumin, to measure protein in the urine; urine dipstick test for hematuria, to measure red blood cells in the urine; albumin to creatinine ratio, to measure protein in the urine; serum creatinine, to determine how well the kidneys are filtering blood; and an estimated glomerular filtration rate (GFR) test, to measure kidney function.

After the screening, the NKF will contact you with your results and, with your permission, will send your results to your doctor or refer you to a doctor or public health facility, if needed. Additional information, education and support will also be provided. To obtain more information on KEEP, call the NKF at (800) 622-9010 or click here.

The American Kidney Fund (AKF) established the Minority Intervention and Kidney Education Program (MIKE) to address the alarming rates of CKD and related conditions in African-American, Hispanic, Native-American and Asian-American communities. MIKE currently has staff in Chicago, Washington, D.C., and Atlanta. Plans are to expand and implement the program in other cities with large high-risk populations.

MIKE offers free medical screenings, nutrition presentations, fitness presentations and follow-up services. These services are provided at a variety of venues, such as churches, expositions, festivals, dialysis centers, community centers, colleges, and corporate offices. If you have questions regarding kidney disease and how it affects minority populations, contact the AKF at (800) 638-8299 or click here.

The Kidney & Urology Foundation of America believes having the knowledge and ability to act on one’s disease is the means to staying healthy. The Foundation produces Sunlight Education and Resource Health Fairs to help people get needed information about how to prevent diseases, such as urinary tract infections, prostate cancer, diabetes, kidney stones and high blood pressure. For additional information call Leticia Colon, MPH, at (800) 633-6628 or click here.

Baxter Healthcare offers a free “Stay in Touch” educational mailing program, bringing education directly to patients. The goals of this program are to promote early diagnosis and referral; help patients make positive, long-term adjustments to their disease; and facilitate selection of treatment options. Baxter kidney patient educators are a group of nurses who assist physicians’ efforts to educate CKD patients, understand treatment options and answer questions related to all stages of kidney disease. Baxter currently provides individualized education to more than 21,000 patients across the U.S. People at risk or diagnosed with kidney disease can enroll in “Stay in Touch” by calling (888) 233-6651 or click here.

DaVita is a corporation that operates dialysis clinics nationwide. Their program, “The Silent Partnership: Diabetes, High Blood Pressure and Kidney Disease,” is designed to educate individuals and keep them from needing dialysis services. Persons with diabetes and/or high blood pressure can take steps to try to prevent kidney disease, and those who have CKD can try to slow the process. Early detection, keeping blood sugar levels and blood pressure under control, living a healthy lifestyle, and education may help prevent or delay kidney disease from progressing to kidney failure.

DaVita offers community education to raise awareness of risk factors, as well as educate those at risk, along with their caregivers and family members. For more information, contact DaVita at (800) 244-0680.

The Life Options Rehabilitation Program offers a wonderful Web site – click here. The Web site provides various modules that gradually walk you through educational information. In addition, the site personalizes your journey and offers a certificate of completion. It is very simple to utilize, even for someone who is not Internet savvy.

In the end, the most important person positively or adversely affected by his or her own actions, or lack of education, is you! So take matters into your own hands, and let these organizations help keep you as healthy as you can be!

Susan Witzel Kreuter, MSW, LCSW, earned her degree from Barry University, in Miami Shores, Fla., and is a Licensed Clinical Social Worker in the state of Florida.

This article originally appeared in the June/July 2005 issue of Kidney Beginnings: The Magazine, Vol. 4, No. 2.

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