Quandra B. Lee has the strength to move mountains – and she does, one pebble at a time. Lee leads a purpose-driven life. One of her life’s missions is to wake up the world to reduce the pain caused by kidney disease. In this month’s column, Lee shares her personal encounter with kidney disease and encourages others to learn about their risk for this deadly, but often silent, condition. She also invites us to join her and others who work to sound the trumpet about saving lives through organ donation.

What Is Kidney Disease?
Kidney disease is a silent disease. The early stages can only be diagnosed through blood or urine tests. Treatment involves dietary changes, kidney dialysis or kidney transplant. There are two types of kidney dialysis. With hemodialysis, a person visits a kidney dialysis center and gets connected to a large machine which filters their blood. The dialysis machine flushes out harmful substances and returns the filtered blood to the patient. Patients typically visit the center three times weekly. Peritoneal dialysis allows a person to be more mobile. They can carry their dialysis equipment in a backpack to perform dialysis at home or elsewhere. Kidney transplant is the ultimate treatment and is discussed later in this article.

According to the National Kidney Foundation of the National Capital Area (NKFNCA; www.kidneywdc.org), kidney failure hits African-Americans harder than it does white-Americans. In addition, African-Americans develop kidney failure at an earlier age. Kidney disease is epidemic in Washington, DC. More than 500,000 people in the Washington, DC, area have kidney disease, and nearly 5,000 patients are on dialysis. More than 1,700 persons await kidney transplants.

Kidney disease has many causes. The main causes are diabetes and high blood pressure. If we develop these conditions, we must work to keep them under control so that high blood sugar and high blood pressure do not damage our kidneys. Quandra Lee discusses ways to reduce the effects of kidney disease in our community: “Take better care of ourselves: exercise and watch what you eat – especially sugar, salt, processed foods and fast foods. Get rid of the stigma of donating organs. Reduce your risk for diabetes, hypertension and being overweight. Have the doctor check your kidneys. Some doctors take care of the current [health] situation without checking the kidneys.” Lee noted that African-Americans and Latin-Americans must actively work to prevent kidney disease, since our rates of this disease are so high. Visit the websites of the National Institute of Diabetes, Digestive and Kidney Diseases at www.niddk.nih.gov and the American Heart Association at www.americanheart.org for more on reducing kidney disease risks.

Participate in kidney screenings at health fairs. The NKFNCA sponsors free kidney screenings in DC. Contact Rachel Schreibman to learn where the next scheduled screenings will be held or to arrange for your church, jobsite or community organizations to sponsor free screenings in DC. Schreibman can be reached at 202-244-7900 ext. 17 or rschreibman@kidneywdc.org. Outside of DC, the NKFNCA does not conduct kidney screenings, but they do provide information and speakers for health fairs within and around DC. Join NKFNCA, Minister Cage and Dr. Audy for a panel discussion on kidney disease at Ebenezer A.M.E. Church in Prince Georges County on April 27. Contact Ebenezer AME Church at 301-248-8883.

Quandra’s Story
For most of her life, Quandra Lee has been active in increasing awareness of kidney disease. She stated that although she has shared bits and pieces of her story, this East of the River interview is the first time that she has told the entire tale in one sitting. “I never told my whole story. Part of my telling my story is to break this stigma, this barrier.”

Lee discussed the day she discovered she had kidney disease. She was 17 years old and in her last year at Calvin Coolidge High School in DC. Lee recalled how she suddenly began to retain “a lot of fluid. I went from a size 4 to size 10 due to fluid.” Lee knew something was wrong when she saw the imprint from the lining of her jeans embedded in her skin. She called her mother who immediately took her to Children’s Hospital. Once there, Lee was diagnosed with end-stage kidney disease. The biopsy revealed that she had only one kidney.

The cause of her kidney disease is unknown. Lee is one of the rare cases in which neither diabetes nor high blood pressure played a role. “Most people [with kidney disease] have multiple conditions. I have only one – kidney disease.”

In November 1990, Lee went from being an active teenager – a cheerleader – to being away from school for nearly the rest of the school year. “I was in the hospital for my whole senior year. I graduated on time – I needed only 1½ credits. My life literally changed in one day. I was in the hospital for a year – in and out. I was in for Christmas and New Year’s. The hospital accommodated me. I came home for graduation pictures, my prom and graduation. I still wasn’t well. I remember a lot of medications.”

Lee stressed the support and understanding she got from those around her: “I was overwhelmed by love of family and friends. Friends from school – we had been friends since seventh grade. They were very supportive.” Lee added that these friends are a part of her life to this day. Lee stated, “I’ve always wanted to educate those around me. I accepted, ‘this is my life.’ I did not have a pity party.” Lee pointed out that when she left the hospital, she taught her younger brother and sister, other relatives and friends to operate her peritoneal dialysis equipment so that they could help if she needed immediate assistance.

Lives Saved By Kidney Donors
“I never asked for a kidney,” said Lee. Her mother, Gillian Bates, did not hesitate to donate a kidney when Lee was 19. Relatives sometimes are not a good match for donating organs to their family members, but in this case, Lee’s body accepted the kidney her mother unselfishly gave. Ten years later, when her first donated kidney failed, Lee’s brother-in-law, the Reverend Tony Lee, Pastor of the Community of Hope AME Church (www.hiphopenation.com), wanted to do something to reduce Quandra Lee’s suffering from the new round of hemodialysis. Reverend Lee met with his doctor for testing to see if he was a good match for a kidney donation for Lee. He turned out to be a great match as a non-related living donor.

To celebrate the many living and non-living donors and to encourage people to learn about the gift of life that one can give by donating organs, the NKFNCA celebrates National Donor Month in April. Lee works hard to encourage people with kidney disease who need a kidney transplant to let friends, family and others help them. “I enjoy helping people to come out of their shell and not be too proud to share their story. People have compassion and love in their heart to help people. Give people a chance to give.”

Lee pointed out the unequal treatment that those who have kidney transplants get compared to those who are on dialysis. People who live with transplanted kidneys are supported for only three years after transplant. Those with transplants are then left on their own to pay for the expensive medicines and other medical procedures associated with their care. Those who are on dialysis are supported until death. Lee is involved in health advocacy to try to get the federal government to give equitable treatment to individuals who live with kidney transplants.

I Choose to Live
Lee is, indeed, making a difference in this world. On March 13, she volunteered to participate in the World Kidney Day celebration at Children’s Hospital. This event was co-sponsored by the NKFNCA. Lee noted that some young people with kidney disease are “rebellious” and may not take the medicines they need to stay well. She encourages teens and young adults to stop viewing their condition as a curse. In addition, Lee volunteered for the NKFNCA kidney screening at the NBC4 Health and Fitness Expo in January 2008. Further, Lee is featured in a Public Service Announcement that has been broadcast on television during the past month and is scheduled to air through April. In this ad, Lee states that African-Americans are at great risk for kidney disease. She adds that we need to learn all we can about kidney disease and get tested to learn if we have it. “Due to the commercial, a lot of people know that I have kidney disease. Kidney disease does not interfere with my work, so most people did not know I had it [before the ad aired].” The commercial “makes a difference [in reaching people].”

Lee does not see herself as a patient. She is full of life and hope. She said, “I take care of me, physically, mentally, and spiritually.” Lee shared her affirmation: “I choose to live.” She added, “I will not live my life being down and out and sad. I live the best life I can.” Lee ended the conversation with, “Think happy thoughts, and good things happen. You always have a choice. There is always a way out. I had two kidney transplants, thanks to my mom and my brother-in-law. God blessed me with another kidney.”

B. Michelle Harris, PhD, MPH, RD, LD, is assistant professor at the University of the District of Columbia. Her focus is public and community health through education, information and research. Contact her at bharris@udc.edu .