She loved macaroni and cheese, her mama’s homemade lemon pound cake and candy—so when my godsister Sonya was told at age 8 that she could no longer eat her favorite foods* because she had Type 1 diabetes, it wasn’t easy for her to give them up. This was still true when she was 18 and even 28, after the disease had disabled her from eyes to feet. Sonya had made so many trips to the hospital to be revived from diabetic comas and sky-high blood glucose levels that we family started to treat her hospitalizations as commonplace. Until her mother called with a more tragic report: Sonya’s kidneys, suffering from complications from diabetes (which was complicated by her eating habits), weren’t working, and she would have to go on dialysis.

Three times a week for hours at a time, a contraption cleansed Sonya’s blood as God had intended her kidneys to do. After about three years, her father donated one of his kidneys to save his child’s life, to give her a new start. For a while, we thought Sonya was going to make it, but she was never able to adopt a healthier lifestyle. She lived for three more years on that borrowed kidney—on borrowed time.

Sonya died last year. She was 32, and my heart aches. I miss her so.

What you don’t know can hurt you.
Like many of us with dangerous but controllable illnesses, Sonya didn’t have to suffer—or die—from kidney disease. For most people, chronic kidney disease (CKD) is preventable. Nevertheless, it affects 20 million—one in nine—Americans, and black folks are four times more likely to have it than whites. “Diabetes and hypertension are the leading causes of kidney disease in African Americans,” says Indiana kidney specialist Sandra L. Gadson, MD, president of the National Medical Association (see sidebar). The more your sugar or blood pressure spirals out of control, the more likely that the tiny vessels in your kidneys will lose their ability to filter blood, leading to their breakdown, she explains. Control your hypertension and diabetes and you’re likely to ward off kidney disease.

Unfortunately, because these diseases as well as CKD often go undiagnosed, nearly half of Americans with advanced kidney disease don’t know that their kidneys are weak or failing. African Americans are less likely to know that they have high blood pressure or diabetes (CKD risk factors), to get tested for CKD or to know the signs that indicate that our organs are in jeopardy.

There are five stages of CKD. In stages 1, 2 and 3, doctors can prescribe medication to control your blood pressure and monitor your kidneys to keep them stable. In stages 4 and 5, people have severely reduced kidney function and either face or already have end-stage renal failure, meaning that their kidneys no longer function. There are two treatments for renal failure: dialysis, where a machine mimics the kidneys in cleansing deadly toxins from the blood, or a kidney transplant. “The average wait time for a new organ is years in most places, so a lot of suffering goes on while a patient is on dialysis,” said Joseph Vassalotti, MD, chief medical officer for the National Kidney Foundation. “That person can die while they’re waiting—that’s the tragedy. It’s a really tough disease.”

Block a low blow.
But it doesn’t have to be. Although both doctors and their patients are under-educated about the prevalence of CKD, we can take charge of preventing it or advocate for ourselves if our kidneys are already damaged. Here’s how...

Know your risk factors.
Most people in danger of or already suffering from CKD don’t know their risk factors, says Dr. Gadson. The hazards include having high blood pressure, diabetes or lupus; a family history of those illnesses or CKD; being over 60; or being of African-American, Hispanic, Asian or Pacific-Island heritage. If any of these characteristics describe you, you already may have CKD, says Matthew Cooper, MD, director of clinical research at the University of Maryland School of Medicine. While researching this story, I was shocked to uncover that my own husband, who has personal and family risk factors, also has undiagnosed CKD. Though he had recently had a physical, no one connected the dots on his risk factors or screening results.

Insist on getting tested.
Urine tests that check for protein and blood can detect CKD early, as can a blood test for creatinine, which measures how well your kidneys are filtering and excreting wastes and excess fluids from your body. Unfortunately, not all doctors administer these tests during physicals, says Dr. Vassalotti. No wonder, then, that nearly half of stage 4 kidney disease sufferers had never been told that there was anything wrong. “Ask your physician to test you if you fall into any of the risk categories,” advises Vassalotti.  

Former Tampa Bay Buccaneer Bobby Howard was diagnosed with end-stage renal failure at the age of 30 in 1993—but only after suddenly falling deathly ill. Later, Howard learned that his doctors should have been testing him for CKD because of his family history of hypertension and kidney disease. “I had the mentality that whatever the doctor says is gospel,” says Howard, who is now a spokesman for the National Coalition on Donation living in Lithonia, Georgia. But “you can ask a lot of questions, and if that doctor doesn’t give you what you want, you have the right to go to someone else.”

Keep hypertension and diabetes in check.
You can manage your high blood pressure by reducing salt, high-fat foods and unhealthy carbs and manage your diabetes by working with your doctor or dietitian to develop a meal plan.* You’ll also want to “exercise, decrease your weight and increase your cardiac performance—how well your heart works,” says Dr. Cooper. These lower blood pressure and glucose levels and promote heart health, which will help protect your kidneys. But if the damage is already done, know that...

You’re not doomed if your kidneys fail.
Though it’s difficult, people can live for years on dialysis. Most kidney specialists (known as nephrologists) advocate transplants, which, with healthy lifestyle changes and monitoring, can improve one’s likelihood of living a normal, healthier, longer life. Though the number of African Americans who receive kidney transplants remains disproportionately low—blacks are four times more likely to suffer renal failure and wait on average 1,861 days for a kidney, compared with 1,290 days for whites, according to the Organ Procurement and Transplantation Network—things are getting better: Clive Callender, MD, head of the Howard University Hospital–based Minority Organ Tissue Trans-plant Education Program in Washington, DC, reports that organizations are successfully enlisting African Americans to sign organ-donor cards and consider living donations, steps that increase same-race donations, which are more likely to be compatible. At the University of Maryland, Dr. Cooper boasts that doctors have cut mortality rates drastically by referring patients for transplants much earlier, thus buying more waiting time before they become critically ill.

I wish that my godsister had taken better care of herself, that we had understood how badly she was abusing her body—and the consequences. I long to hear her singing in the church choir and wish that I could tell her I love her and that her disease doesn’t have to mean her end. But witnessing her struggle has empowered me to support my husband. And when I next stand before my doctor to discuss my own struggle with prediabetes, I’ll have Sonya in mind, as well as a list of questions and requests that will help me take a strong health stand—for my kidneys, my body, my family and me.

* Today, the American Diabetes Association advises that diabetics can eat foods containing sugar in moderation and in conjunction with an exercise plan. (Visit www. Diabetes.

Resources
National Kidney Foundation
Runs a free kidney-health screening program and offers information on kidney disease, from preventing it to living with it. 800.622.9010; www.kidney.org.

Minority Organ Tissue Transplant Education Program
Works to prevent chronic kidney disease and increase organ and tissue donations from people of color. 800.393.2839; www.nationalmottep.org.

Institute of Diabetes and Digestive and Kidney Diseases
Information on kidney and urologic disease, clinical trials, links to patient organizations and related CKD databases. 800.860.8747; www.niddk.nih.gov.

“Sugar,” “Pressure” and Kidney Disease
How the three are linked and the symptoms you need to be aware of

Most people are born with two kidneys, each about the size of a fist, located on each side of the spine at the bottom of the rib cage. Each has up to a million tiny vessels, which filter our body’s blood and fluids, and they add or remove chemicals and water according to our body’s needs. Whatever toxins the kidneys filter out are turned into urine and sent to the bladder, where the liquid waits to be excreted. Healthy kidneys return about 200 quarts of fluid every 24 hours to our bloodstream, of which about two are eliminated when we urinate.

With diabetes, excess blood glucose—or sugar—can act like a poison, damaging the vessels in your kidneys. Similarly, high blood pressure impedes blood flow through the arteries and vessels, including those in the kidneys. In both cases, it makes it difficult for the kidneys to filter blood waste.

Chronic kidney disease (CKD) is called a “silent killer” because patients can lose up to 85% of their kidney function before symptoms show that something is wrong, says Matthew Cooper, MD, director of clinical research at the University of Maryland Hospital. Testing is the best way to detect CKD.

Here, warning signs that you may have a serious problem:

  • Need to urinate more or less often
  • Swelling and/or cramping in ankles, feet, legs, face and/or hands
  • Fatigue
  • Severe itching
  • Metallic taste in your mouth
  • Nausea and vomiting
  • Shortness of breath
  • Feeling cold
  • Dizziness and trouble concentrating
  • Lower-back, side and leg pain
  • Darkening of skin