Speaking Up About a Silent Killer


Three times a week, in a plain red-brick building near the Pentagon City mall in Arlington, a machine keeps me alive.

It looks much like a small filing cabinet festooned with hoses and a cranking pump that squeaks as it turns. The machine performs a cleansing of my blood called hemodialysis ("hemo" meaning "blood," "dialysis" meaning "passing through"), replacing some of the function performed by healthy kidneys that I lost to disease.

Between the time spent on dialysis and other hours devoted to related testing, I reckon I've lost about a third of my life. My focus, though, is on the 65 percent that's left.

An estimated 26 million American adults live with kidney disease, according to a recent study in the Journal of the American Medical Association. District residents are disproportionately affected: For example, zip code 20019 in Southeast Washington has 1,369 new cases of end stage kidney disease per 100,000 residents, 44 times the national average, according to the National Minority Quality Forum, an organization that collects data on racial and ethnic health disparities.

More than 341,000 Americans undergo regular dialysis treatments, and more than 75,000 of them are waiting for a kidney transplant, according to the National Kidney Foundation; the estimated cost to Medicare, private insurers, and patients for dialysis, transplants, and treatment is $32 billion a year.

There's no denying dialysis is a drag, but not all of the changes brought about by my disease have been negative. Kidney disease has made me more aware of other people's problems and the need for better communication on health issues. At middle age, I was reluctant to learn a new field. But now, at age 56, I'm motivated to help people get early treatment and delay the onset of this disease.

Hoses on the machine lead to a pair of 15-gauge needles that nurses have stuck into my arm and taped into place. The needles take blood from a fistula—a surgical joining of a vein and an artery—for cleansing and then return it for distribution throughout my body.

What my kidneys used to do on their own now falls to a cylinder that contains an acidic brew to help remove waste products from my blood. A mixture of bicarbonate and pure water blends with chemicals to keep electrolytes and minerals in my blood at levels chosen by my doctors. The exact mix is unique to each patient.

The machine beeps and buzzes, R2D2-like, as it monitors the flow of blood. For me, sitting in a green reclining chair, what begins in a brief flash of pain as the nurse inserts the needles quickly becomes a battle with boredom. I'm attached to that machine for four hours at a stretch.

The dialysis process doesn't substitute for everything done by healthy kidneys. I must limit my consumption of some foods, such as potatoes and broccoli. Too much calcium from dairy products would damage my bones and heart. But not protecting my bodily stores of calcium could also be a problem. At every meal I take pills that keep my body from digesting the phosphorus in my food, which could leach calcium and weaken my bones.

My diet is now rich in foods I once ignored: fresh fruit and vegetables, fish, and rice. My last pizza was in 2006, a lifetime ago. Instead of Key lime pie, I eat a bowl of berries.

I must also control how much liquid I consume. If the machine removes too much fluid during a session, I could face extreme fatigue and muscle cramping. But leaving too much fluid could cause congestive heart failure. Without regular dialysis or a kidney transplant, I would live a few weeks at most, doctors tell me.

Diabetes, high blood pressure, heart disease, vascular disease, or a family history of kidney disease puts a person at risk for kidney problems, according to the National Institute of Diabetes and Digestive and Kidney Diseases, or NIDDK. I had three of those five factors when my kidney disease was diagnosed in 2007. My doctors initially treated me with medication and diet. But eventually, my kidneys failed; dialysis and transplant were the only options left to keep me alive.

In a sense, chronic kidney disease is a silent killer stalking large parts of the population. The Congressional Kidney Caucus estimates that 80,000 people die each year, making it the ninth-leading cause of death in the country.

Blacks are particularly at risk. Half of the country's African American population has at least one risk factor for kidney disease, according to an April 2008 report in the American Journal of Kidney Diseases; 30,000 reach end stage kidney disease every year, a rate four times greater than for whites. But less than 3 percent of African Americans consider kidney disease a top health concern, the study found.

The ultimate solution for failed kidneys is to get a new one. Last December I spent half a day undergoing tests to be approved for the transplant list. Nurses took a dozen samples of my blood—ouch! Once each month I must send new blood samples. More tests, including yearly stress tests, are required later to show that my heart could withstand the surgery.

The Kidney Foundation estimates that 1,177 Washington area patients are waiting for a kidney along with me; nationwide, an estimated 17,000 kidney transplants were performed in 2005.

There are days when the management of my many illnesses can seem overwhelming.

The probability of survival one year after beginning dialysis, according to the NIDDK, is 78.3 percent. After five years, that rate drops to 32.1 percent. After a decade on dialysis, the survival rate is 10 percent, according to a study of patients from 1995 to 2005.

I'm hoping to beat the Washington area's average wait—five to seven years—for a kidney transplant. I'm hoping to beat the Grim Reaper, too.

Life with kidney disease isn't easy. But it is a life well worth living.

Special to The Washington Post. Reproduced with permission of the copyright owner. Further reproduction or distribution is prohibited without permission.