Two years and five months. That’s how long I’ve been on the waitlist for a kidney at Northwestern Memorial Hospital. But when it’s the kind of list that decides whether you live or die, it seems more like an eternity.
I was diagnosed with kidney failure at age 29 due to a rare disease — focal segmental glomerulosclerosis. Since then, I spend 10 hours each night hooked up to a machine that filters out the toxins that my kidneys are unable to remove. Although peritoneal dialysis is keeping me alive, I’m far from living.
Patients with kidney failure can only tolerate dialysis for so long before it stops working. The only real cure for kidney failure is to undergo a kidney transplant. But there’s one problem: The waitlist for a cadaver kidney is long — really long. In the Chicago area, a kidney patient can expect to wait six to eight years for his or her name to be called.
When I first got sick, I figured that I wouldn’t have to wait for a cadaver kidney, because I’d have no trouble finding a living donor. Several of my family members got tested, as well as a few strangers who responded to my Facebook pleas. Unfortunately, all of them dropped out or were ruled out somewhere along the way.
After a while, I realized that it might be harder than I thought to find someone who is both healthy and brave enough to donate their kidney.
As the years and months pass by, my health has further deteriorated. I fear that I will not survive the wait. And while I wait, my life is on hold in many ways. Daily activities leave me breathless, and due to weakness and lack of energy, I’ve been relegated to a small part-time job. It’s been hard to watch my peers pass me by in life. If I get a kidney transplant one day, I don’t exactly have big plans to climb Mount Everest or swim with the sharks. Really, all that I want is to do normal things like normal people who are my age — 31.
At this moment, there are over 91,000 others in the same boat as I am. Because over 170 million people are registered organ donors in the U.S., you might think that there is enough supply to meet demand. In truth, however, cadaver kidneys are rarely transplanted. A person must either die while on ventilated support or from brain death. Generally, death must also occur within a hospital setting. In 2024, this happened only 20,000 times.
The deceased organ donation program will never resolve the kidney waitlist. And while researchers are making strides in the study of xenotransplantation — the transplantation of animal kidneys into humans — the U.S. Food and Drug Administration only recently approved the first clinical trial testing for such procedures. We urgently need more living donors. After all, human beings only need one kidney to survive. For those who donate a kidney, his or her remaining kidney grows twice in size in order to compensate. This allows them to function as normal and enjoy a regular lifespan. Unfortunately, living kidney donation is even more rare than deceased kidney donation. Annually, only about 6,000 kidney transplants are completed via living donation.
I want to clarify some points of interest surrounding the donation process:
- What if I need my kidney later on? You will undergo rigorous testing. If there is any concern that kidney removal will have a negative effect on your health now or later, you will not be approved for surgery. In the unlikely event that you need a second kidney later on, you will be placed at the top of the kidney transplant waitlist.
- How intensive is the surgery? Surgery is now done laparoscopically, reducing the risk of complications and the length of recovery.
- Who pays? The kidney patient’s insurance will cover the cost of testing and surgery for living donor applicants.
- Will I regret donating my kidney? According to research, 9 out of 10 living kidney donors say that they would donate again if they could.
I want to acknowledge that becoming a living kidney donor requires a certain amount of socioeconomic privilege. This is something that I cannot account for. But for those who are in a position to undertake this process, and may be wondering “Is this really something I can do?” Let me tell you: Yes. You can make a difference.
Nicole Leonard is a social worker and librarian who lives in Lakemoor. She is living with end-stage renal disease.
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