Waiting on a Kidney
April is National Donate Life Month—my mother’s birthday was March 31. This single day gap proved to be a theme in her life I wish we could have avoided.
My mother, Sylvia, was diagnosed with Lupus, a chronic autoimmune disease, in 1992 when I was just two years old. Her body was mistakenly producing antibodies against its own body tissue—it was attacking itself. As a result, her kidneys began to fail. In 2005, she was placed on home dialysis. This method did not properly remove the waste from her system, and she was told she needed to start hemodialysis at a DaVita Dialysis Center. She was forced to retire early from her career as a special education teacher in order for her to travel three days a week to the closest center available to do her dialysis treatments. She spent six hours a week in the car, and 4 hours per treatment in a frigid, sterile room hooked to a machine.
She was placed on the kidney waiting list in 2006. No one was a match for her; not my brother, my dad, or even myself. In May 2010 she noticed a lump on her breast, and went in for a screening. Days later she received a call from her primary care doctor to confirm that she indeed had breast cancer. The very same day she received another call—this time for news she had been anticipating for over a decade—a kidney was available. Due to her recent diagnosis and upcoming chemo treatments, she unfortunately had to decline the kidney. Her words were, “You can give it to someone else.” The following year, Mom was placed in hospice care. With her immune system in complete shutdown, her body could no longer handle the suffering. On May 21, 2011, I graduated from college with mom in the front row in a wheelchair—smiling. Ten days later, she passed away.
The Insidious Toll of Kidney Failure
Kidney failure has affected more than just my family. 300 people begin treatment for kidney failure every 24 hours. Chronic Kidney Disease, the precursor to kidney failure, is the most common form of kidney disease and is characterized by a gradual loss in kidney function. As an associate at the Milken Institute’s Center for Strategic Philanthropy (CSP), I was part of the research team that wrote the Giving Smarter Guide on Kidney Failure— the product of a year-long effort to identify strategic philanthropic opportunities that can move the needle on unmet needs specific to kidney failure research and treatment. This research and writing process cemented for me the significance in sharing our stories. Unfortunately there are more stories like mine—my mother was not alone.
Kidney failure is an expensive and abysmal disease that leaves hundreds of thousands of people waiting; and sometimes, it can be too late.
- There are currently 121,678 people waiting for lifesaving organ transplants in the U.S. Of these, 100,791 await kidney transplants.
- Over 3,000 new patients are added to the kidney waiting list each month.
- In 2014, 4,761 patients died while waiting for a kidney transplant. Another, 3,668 people became too sick to receive a kidney transplant—like my mother.
- African-Americans are the largest minority group in need of organ transplantation; making up 13% of the population, 34% of those waiting for a kidney.
CSP’s latest endeavor has been to launch an organ donation campaign with the Citrone Family to make the city of Pittsburgh the “Organ Donation Champs." Their logo was recently unveiled at a Penguins Game.
Saving a Life is Much Easier Than You Think
95% of Americans think that organ donation is a good idea. The problem is that only half of Americans are registered. That means that there are more than 100 million people in the U.S. alone who could easily save a life or lives—they just need to register. Fortunately, registering is becoming easier. To become an organ donor, you can register online at organdonor.gov. The option is yours to give the gift of life as a deceased donor, or as a living donor.
Social media has been another game-changer in spreading awareness to the 100 million not on the organ donation list. A national database built on #ORGANDONOR gives donors around the country a voice in the campaign to help spread awareness and participation.
Researching the Giving Smarter Guide on Kidney Failure was profoundly bittersweet for me. I am realizing that if my mother’s time on the waiting list had been shorter, she very well may have lived longer. That would have meant many more smiles, hugs, and giggles from the most important woman in my life. I can’t bring my mom back, but I can do whatever I can to help other families like mine. There are 100,791 people in the U.S. waiting for kidney transplants; and behind every one of the numbers, there is a story like mine—and perhaps a child like me—desperately wishing for more of the smiles and hugs that only a parent can give.
Please register to be an organ donor now.