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Celebrate World Kidney Day

Get screened for chronic kidney failure

Date: March 8, 2012

Location: Cathedral Housing Community Room
1472 Washington Street

Time: 3-7 p.m.

Contact: Kendall Maggi at 800-542-0001

Sponsored by the National Kidney Foundation Serving New England

Kidney Failure:
A silent but deadly disease

Victor Benson (left) donated a kidney to Lloyd Smith, his uncle (right). They are pictured with Smith’s wife, Sandra, at the National Kidney Foundation’s Spring on the Park Gala held last year in Boston. (Photo courtesy of the National Kidney Foundation Serving New England)

Lloyd Smith, 46, admits he did not take the news too well that he was suffering from kidney failure. In his mind, he was still an athlete, having played football in college and the Navy. He was also the man of the house to his wife and four children. As far as Smith was concerned, what the doctors said couldn’t possibly be true. “I knew I could beat it,” he said. “I was in denial.”

In his case, there were warning signs. Doctors in the Navy had advised him that there was too much protein in his urine — a clear sign of kidney problems. But he still had 90 percent of his kidney function at the time. Though he managed to keep his kidneys functioning for 13 years, he still was not prepared to hear his doctor tell him “your kidneys are going to give out on you.”

Kidney failure is one of the leading causes of death in African Americans in this country. In Massachusetts, the statistics are alarming. According to the Massachusetts Department of Public Health, in 2008 the death rate from kidney disease in blacks was more than double that in whites.

Even more alarming is that kidney failure is in many cases largely preventable. Its leading causes are diabetes and high blood pressure — two illnesses prevalent among people of color. Neither disease has to result in kidney failure. Compliance with medication and lifestyle — healthy eating, exercise, blood pressure and weight control and not smoking — can often prevent kidney failure and may stop its progression.

Smith was suffering from focal segmental glomerulosclerosis, more commonly known as FSGS, a condition that occurs five times more frequently in African Americans as compared to whites in the U.S. In FSGS parts of the filtering elements of the kidneys (glomeruli ) become scarred, which prohibits them from cleaning the blood appropriately. FSGS accounts for 30 percent of the cases of kidney failure annually.

People might not give their kidneys a second thought — until they fail. Much like comedian Rodney Dangerfield, kidneys get no respect for their role in filtering blood to ensure certain nutrients, such as proteins and sugar, remain available to the body while removing metabolic waste as urine. But kidneys do much more. They keep a healthy balance of several minerals like potassium, which helps muscles, including the heart, function normally. They make vitamin D, one of the hormones necessary for bone health. They stimulate the formation of red blood cells and they play a key role in regulating blood pressure.

Like diabetes and high blood pressure, kidney failure is initially silent. Damage progresses slowly and quietly through five stages. Stage 5 is considered end-stage kidney failure. At that point, only two procedures — dialysis or transplantation — can keep a person alive.

Kidney transplantation is the preferred treatment. It improves quality of life and increases survival. While dialysis can function as a surrogate kidney and mechanically cleanse the blood, it is not ideal. It is time-consuming — three-to four-hour treatment sessions three times a week — and costly. And survival on dialysis is very limited. For example, only about 30 percent of diabetic patients are alive after five years of dialysis treatment. With a well-functioning transplant, survival is much improved in comparison.

Kidney transplantation has made great strides in recent years. Contrary to the belief by some that it is experimental, the procedure was first performed at Brigham and Women’s Hospital in Boston in 1954. Not only is it the oldest type of transplantation it has one of the highest success rates.

Data from the Organ Procurement and Transplantation Network (OPTN), which maintains the only national patient waiting list, indicate that more than 90 percent of transplanted kidneys survive the first year. Even after five years more than 80 percent of kidneys donated from living donors still function well.

Transplantation is the preferred solution, but it is not an easy one for African Americans. While blacks constitute 12 percent of the U.S. population, they make up 33 percent of the more than 88,000 people nationwide waiting for a kidney transplant.

Most transplanted kidneys come from people who have died. However, the number of people waiting for kidneys has increased steadily, while the number of kidneys available from deceased donors has remained constant. The result is a severe shortage of kidneys and a longer waiting time for people with kidney failure.

A shortage of organs donated by minorities can contribute to longer waiting periods for transplants for minorities. Within a year of placement on a waiting list, typically only 10 percent of blacks are transplanted as compared to 18 to 20 percent of whites.

In Smith’s case, the decision was made to transplant before he got to end-stage kidney failure. His luck held out even further. Though several of his relatives and loved ones lined up to be tested as potential donors, one by one each was turned down. It came down to one last nephew. Victor Benson, 33, stepped right up. He would probably do it again if he could.

“He’s more like a brother to me,” he explained. “He used to pick me up from pre-school. He helped me with my times table and worked with me in sports.” Benson said that once he made the decision to donate it never occurred to him to change his mind.

Benson underwent a series of tests. The doctors checked his heart; they looked for signs of diabetes, cancer, kidney defects and certain infectious diseases. Even a psychiatrist weighed in to make sure he was emotionally ready to make such a sacrifice.

A call for help from Drs. Callender and Koh

Source: Health Resources and Services Administration
“The transplant team is there for you,” he explained. “There is no pressure to donate.” A question he said they continued to ask was “are you sure?”

Those were the last words he heard just before he was rolled in for the surgery.

Unfortunately, Benson’s willingness to donate his kidney is the exception rather than the rule. Research by Dr. Clive Callender of Howard University College of Medicine discovered that blacks cited five major reasons for reluctance to become donors: lack of transplant awareness; religious myths and misperceptions; distrust of the medical community; fear of premature death; and racism. The biggest concern was that doctors would allow blacks to die in order to procure their organs.

In response, Callender developed the National Minority Organ Tissue Transplant Education Program (MOTTEP), the purpose of which is not only to increase awareness of the need for tissue and organ donation among minorities but to inspire minorities to adopt healthier lifestyles and behaviors to decrease the need for such donation. MOTTEP’s motto is “Love Yourself, Take Care of Yourself.” Since the organization was developed minority donations percentages have doubled.

Since his procedure, Smith is still followed closely by his doctors. He started out with 46 pills a day in part to prevent his immune system from attacking the donated organ. He’s now whittled that down to 11 pills daily.

Smith considers himself lucky. “I’m there for milestones I would have missed,” he said.

His oldest son is engaged; another son is getting ready for college. The news isn’t all good though. His donated kidney is showing traces of FSGS — the disease has a high likelihood of recurrence — so he is taking it one day at a time.

Benson, too, requires regular follow-up visits. Serum creatinine, a breakdown product from muscle metabolism, which is used to measure kidney function, increases in people with one kidney. Doctors keep a sharp eye on it to make sure it does not exceed a certain level. “Recovery to me was like an injury in football,” he explained. “My life is totally the same.”

Benson has not stopped giving. On his driver’s license, he’s listed as an organ and tissue donor.