Spending nine hours a week in a dialysis chair watching her blood filter through a large machine was not what Wendy Rodgers imagined for her twenties.
“Going through dialysis was hard for me,” Rodgers said. “It was a reminder that you might not be there next time. It wasn’t viewed as a place where you’re going to get better.”
Rodgers was 27, a young mother to an 11-year-old daughter and just beginning her career as a teacher when her life was disrupted by sudden news – she was diagnosed with lupus, and her kidneys were beginning to fail from the disease.
Her doctors then started dialysis treatments. One type of dialysis, hemodialysis, uses a machine that acts as a surrogate for the kidneys, filtering toxins and removing excess fluid from the body.
“It was a total life change,” said Rodgers. “You go three hours at a time, three times a week. At first, I went Mondays, Wednesdays, and Fridays at 4:30 am. Mondays were the harshest and I spent most Mondays in bed. It would take hours before my body felt strong enough to do anything.”
WATCH NBC NIGHTLY NEWS COVERAGE OF KIDNEY DIALYSIS:
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Rodgers is one of 20 million Americans with chronic kidney disease – 325,000 are on dialysis and 128,000 are living with a kidney transplant. African-Americans are one-third of those patients, despite being just over 12 percent of the population. African-Americans also develop kidney disease on average 10 years earlier than Whites.
Diabetes is the most common cause of kidney disease across all populations. The remainder of cases – referred to as non-diabetic kidney disease – are associated with other factors# such as high blood pressure, HIV, drug abuse, and conditions such as lupus and focal segmental glomerulosclerosis, or FSGS. FSGS was responsible for basketball stars Alonzo Mourning and Sean Elliot developing kidney failure and requiring transplants.
Kidney disease and all of its causes disproportionately affect African-Americans. It was previously thought that kidney disease occurred more frequently in this population due to out-of-control diabetes and high blood pressure in the community. This no longer explains the entire picture.
“Although there are differences in access to care and economic factors within the African-American community,” explained Dr. Barry Freedman, professor and chief of the section of nephrology at The Wake Forest University School of Medicine, “The higher risk of non-diabetic kidney disease appears to be related solely to differences in one gene between races, an amazing scientific breakthrough.”
New research suggests that the reason for more non-diabetic kidney disease – particularly those associated with high blood pressure, HIV and FSGS – are related to differences in one gene, called APOL1, between African-Americans and other populations.
“We think these kidney disease variants became common in Africa because they protected people against African Sleeping Sickness, a parasitic infection,” said Dr. Pollak, chief of nephrology at Beth Israel Deaconess Medical Center.
Historically speaking, Africans without this altered gene died of African Sleeping Sickness, leaving behind a population of Africans who continued to pass on the gene.
With one copy of the gene, a person is protected from the infection. With two copies – one from each parent – that person is up to ten times more likely to develop kidney disease. As the gene variants are passed down, so is the risk of kidney disease.
While keeping blood pressure within a normal range can keep kidney disease from worsening, researchers now recognize that simply controlling blood pressure is not enough to prevent kidney disease when this gene is involved.
“The biggest risk factor for kidney disease in any person, especially African-Americans, is having other relatives with severe kidney disease. That’s a bigger risk factor than having diabetes or high blood pressure alone,” said Dr. Freedman.
The beginning stages of kidney disease are silent, and people often have no symptoms. High blood pressure and diabetes can also damage the body before symptoms ever surface. So routine physicals including blood work, blood pressure, blood sugar checks, and urine testing are key, especially if someone is at high risk or has a strong family history.
“The whole idea is to catch it early. The later it’s found, the less a doctor can do about it,” said Dr. Freedman.
In addition to passing down the altered APOL1 gene, other causes of kidney disease can also be passed down – namely diabetes and lupus. African-Americans in general have more aggressive forms of lupus, a condition where the body’s immune system attacks itself and manifests in a variety of ways, including joint pain, rashes and kidney disease.
For those reasons, knowing your family’s medical history and encouraging family members to be screened is critical.
“You’re talking about a prick on your finger, or checking blood,” Rodgers reminds her family members. “Look at the scar on my arm from a 16-gauge needle in my arm during dialysis. I know people whose legs have been amputated. Would you like this to happen?”
If kidney disease progresses to the point where there is no function left, the main treatments are hemodialysis, using a machine; peritoneal dialysis, which involves irrigating the abdomen with fluid that also corrects electrolytes and removes toxins; or a transplant.
Which option one chooses is personalized to the person’s lifestyle, comfort level with self-administering treatments, to the extent of the kidney damage, where their particular kidney specialist is affiliated or even geographic location.
Not all dialysis centers are the same. Patients looking to compare centers can check a Medicare website by typing in a name, zip code or geographic area. The site compares how many people survive at a particular dialysis unit, how well blood counts are maintained and how well they clean patients’ blood overall against the national or regional averages.
An alternative to dialysis is a kidney transplant. Rodgers maintained her 3-day-a-week dialysis schedule for nine years before a donor match was found.
“I’m a year and a half out of my transplant,” said Rodgers. “I realize that I missed out on a lot of life. I wasn’t able to go to basketball games or be a soccer mom. You don’t realize how much time you invest in just being sick.”
For many, transplantation is not an option, however, especially with the disparity between the number of African-American donors and the number waiting for kidneys. Many will remain on dialysis for years.
“When I went back and talked to some of my friends on my old dialysis shift, I could see the look in their eyes,” recalled Rodgers. “They really wanted to get out of the dialysis chair too, to be free. I was happy to see them again, but there was a sadness. I wanted the same for them.”
Part of the problem Rodgers discovered in her outreach work was fear in the African-American community with respect to organ donation.
“People were really afraid. For one, they feel like people will steal their organs,” said Rodgers. “We work to educate people that doctors still have to do all of the life saving methods on someone. The process is so fragile, the organs wouldn’t be able to be transplanted even if they didn’t.”
None of Rodgers’ family members were a match for her. So, she relied on a gift from a mother who made the tough decision in a hospital room to donate her daughter’s organs – one of which was Rodgers’ new kidney.
With the new research with APOL1, and research looking into the genetics behind kidney disease from diabetes, both Dr. Freedman and Dr. Pollak agree that dialysis and transplantation will not remain the only options, that his research will lead to new treatments.
“I am very hopeful that if we understand exactly how APOL1 is involved in kidney disease, we can find ways to reduce the risk in African-Americans to be the same as in other groups,” said Dr. Pollak.
The ProPublica Dialysis Facility Tracker: http://projects.propublica.org/dialysis/