Kidney Disease:
A dangerous mystery
And so it goes for Paulette Ford.
Three days a week, she trudges over to the Kidney Center and ties into a dialysis machine for about three-and-a-half hours each session.
“Some days are better than others,” she said.
For the last eight years, Ford has made the best of it by listening to music or watching television. “Mostly, I study,” she said, proudly proclaiming that she wants to receive all A’s from Roxbury Community College so she can transfer to Simmons College to study nursing.
At the age of 28, she already knows more about chronic kidney failure than most.
Ford was diagnosed at 15. The medications prescribed at the time were unable to prevent the debilitating condition; five years later, doctors discovered that she had lost 95 percent of her kidney function. Dialysis was her only recourse at the time.
At first, she didn’t know what to expect. “I was very angry — scared and angry,” she explained. “But over time, it’s gotten easier.”
It might be getting easier for Ford, but there’s nothing easy about kidney disease.
More than 25 million people in the United States have chronic kidney disease (CKD), and as Dr. Winfred Williams, a nephrologist at Massachusetts General Hospital tells it, as many as 20 million of them are “walking around with mild to moderate kidney failure and are completely unaware of it.”
“There are no symptoms early in the disease,” Williams explained. “You often don’t know you have it until kidney failure … and the [disease] is life changing. It affects your physical well-being, your economic well-being, your casual life.”
Everything.
And the disease is on the rise. A recent report by the Centers of Disease Control and Prevention found that, based on crude estimates of prevalence, there was an almost 16 percent increase in CKD between the time periods of 1988 to 1994 and 1999 to 2004.
One reason the disease goes undetected and undiagnosed for so long is the very anatomy of the kidney. The purpose of the kidneys is to filter out wastes from the blood and eliminate them through the urine. The filtering units of the kidneys — nephrons — number about a million, and give the kidneys a large reserve. As CKD advances, there is a sufficient supply of nephrons to keep the kidneys functioning efficiently. Often, kidneys can still do their job at 25 percent capacity.
But the damage is irreversible. When kidneys can no longer function, the only alternatives are dialysis or transplantation.
And kidney failure is not the only consequence. CKD increases the risk of cardiovascular complications, which account for half of all deaths in patients with kidney disease.
Blacks and other minorities — Hispanics, Asians and American Indians — are hard hit. Although blacks constitute 13 percent of the U.S. population, they make up almost one third of all cases, and, according to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), are nearly four times more likely than whites to develop kidney failure which requires dialysis or a kidney transplant.
Mortality rates are high as well. CKD is the ninth leading cause of death in this country. In Massachusetts, the figures are worse. Kidney disease is the fourth leading medical cause of death in blacks, and the seventh in whites. Blacks in this state die at a rate twice that of whites afflicted with the chronic disease.
The two biggest culprits are diabetes and high blood pressure. Together, they account for almost 75 percent of the incidence of CKD. Diabetes alone is responsible for roughly half of all cases.
Hypertension, or high blood pressure, accounts for another 27 percent of cases, and poses a dual problem. It causes CKD, but CKD also causes high blood pressure. In addition to filtering out wastes, the kidneys release hormones that control blood pressure, make red blood cells and keep bones healthy. The loss of this capacity causes the blood pressure to rise. “It’s often difficult to determine which came first,” said Williams.
Other causes of CKD include certain inherited diseases, immune system diseases and inflammation of the glomeruli, the small blood vessels in the kidney. CKD can also run in families. In some cases, the cause is unknown.
An underlying problem is that CKD often goes undiagnosed. Most are unaware of the condition until stage 5 or kidney failure when the symptoms are distinct — swelling, especially around the eyes or ankles; pain in the lower back; burning sensation during urination; frequent urination, especially at night; fatigue; high blood pressure and muscle cramping.
An equally disturbing problem is the lack of awareness of the link between diabetes, high blood pressure and CKD. A survey of blacks conducted by the NIDDK found that only 8 percent of those interviewed named kidney disease as a consequence of high blood pressure, and only 17 percent cited diabetes as a cause. Furthermore, only 10 percent of those surveyed who had high blood pressure and only 29 percent of those surveyed who had diabetes were aware that kidney disease resulted from not treating their conditions.
This is particularly disturbing when it comes to African Americans.
”African Americans with type 2 diabetes have earlier kidney decline — three times the rate of whites,” Williams said. In addition, African American men ages 20 to 29 are ten times more likely to develop kidney failure from high blood pressure than whites in the same group. Similar findings are noted for African American men ages 30 to 39.
Ford knows all too well about the link between diabetes and kidney disease.
She was diagnosed with diabetes at the age of 11 in 1991. Initially, the doctors thought it was type 1 diabetes, but years later, determined it to be type 2.
She was a big girl from the start. At age 11, she was 5 feet tall and weighed 170 pounds. At one point, she tipped the scale at 220 pounds. “I was not very active and I ate too much,” she said. Obesity is a leading cause of diabetes, even in children.
But four years later, another problem emerged.
It was the little things she noticed at first. Constant fatigue. Constant thirst. Nausea. The swelling in her ankles and legs didn’t make life any easier.
She also was in denial. The swelling didn’t bother her at first and her mother didn’t notice anything wrong because Ford wore large and baggy clothes. She was afraid. “I thought I had cancer,” she said, laughing at her amateur diagnosis.
In 1995, she was diagnosed with focal segmental glomerulosclerosis (FSGS), a disease that affects kidney function by attacking the glomeruli, the tiny units within the kidney where blood is cleaned. According to Williams, “FSGS is a very big cause of kidney failure, and more common in blacks.
High blood pressure, diagnosed two years after her diabetes, didn’t help matters any.
These days Ford is disciplined about regular exercise and watching her sugar and salt intake. She said she must avoid foods high in potassium and phosphorus and limit her fluids to one liter a day.
And she is in a medical office on a regular basis.
“Every two to three months I see a doctor,” she said. “It can be my ophthalmologist to check my eyes, the endocrinologist for my diabetes, the nephrologist for my kidneys, or my primary care physician.”
Ford has one bit of advice.
“Pay attention to the little things,” she said. “I didn’t at first.”
Williams echoed that sentiment. It’s important to detect and treat CKD early on to try to stave off kidney failure. ACE (angiotensin-converting enzyme) inhibitors and ARBs (angiotensin receptor blockers) have been successful in maintaining kidney function.
Screening is important. For most healthy people, an annual physical and simple urinalysis will do.
But, he points out, “for those at risk — people who are overweight, have hypertension and borderline diabetes — should have a renal panel and test for protein in the urine.”
The main thing, he says, is to try to identify the risk factors early. If a person comes from a family with a high incidence of diabetes, for instance, he or she should get checked and try to make the appropriate lifestyle changes. |
| Paulette Ford has spent eight years on hemodialysis, which mechanically filters wastes and extra fluid from her blood. Ford receives dialysis three times a week for three-and-a-half hours a session. |
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Winfred W. Williams, M.D.
Transplant Nephrologist
Renal and Transplantation Units,
Massachusetts General Hospital
Harvard Medical School
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