The Endless Waiting of End Stage Renal Disease

Thousands of people are living on borrowed time awaiting a kidney transplant
Delicate pink flowers blowing in the wind show end stage renal disease

Credit: nature365

End stage renal disease is the medical term for kidney failure, a condition that happens when the kidneys are no longer able to filter excess fluid and waste products from the blood. Untreated kidney failure is uniformly fatal. Other than a kidney transplant, the only treatment is dialysis, which can be performed using an artificial kidney machine (hemodialysis) or the person’s own abdominal lining (peritoneal dialysis). Both treatments are effective, but they must be done frequently. People who get treatment at a dialysis center must go several times a week for hours at a time. Those who get dialysis at home may receive treatment one or more times a day.

As of 2013, 468,000 Americans were undergoing dialysis for end stage renal disease. Of these, about 100,000 are on the transplant waiting list. And despite the fact that kidneys are one of five major organs that can be donated by a living donor, the average wait time for these patients is about 3 to 5 years. In some states, the waiting list can be up to 10 years long.

Each year, about 90,000 people in the United States die while awaiting a kidney transplant. Tens of thousands more are too ill to receive a transplant by the time a donor is available.

Keysha was a 22 year-old woman who had systemic lupus erythematosus, or lupus, an autoimmune disease. She was diagnosed with the illness when she was 15 and had been doing well for several years on immunosuppressive therapy. But five years ago, her kidneys started to fail. (Kidney disease is a common complication of lupus.) Not long afterward, she was diagnosed with end stage renal disease.  

Keysha underwent hemodialysis at home every day. Her mom, Carolyn, a 45-year old restaurant worker and single mom, cared for her daughter, as well as her 10-year old son.

Pink flower blowing in the wind shows the fragile life of someone with end stage renal disease

Credit:mwmo.org

“Keysha was so angry,” Carolyn confides. “She felt like she never got to be a teenager, never got to do any of the things her friends did. She never even had a boyfriend. Keysha was so beautiful! But the steroids…” her voice trails off before the sentence is complete.

“Keysha never finished high school,” Carolyn goes on. “Not because she couldn’t…she just didn’t want to go anymore. And how could I force her, knowing what she was going through?”

“Now I almost wish I had pushed her more,” she adds. “Maybe if she had some friends…someone her own age to talk to, things would have turned out differently. But I guess I’ll never know.”

Keysha’s anger was understandable. Her life had been irrevocably changed by her disease and treatment side effects. The high doses of steroids she had to take to control her symptoms, in particular, caused changes in her appearance that made her terribly upset. She had developed a characteristic “moon face” and acne, and she had gained weight. The steroids also made her irritable and depressed.

Keysha went on the transplant waiting list when she was 17 years old. At 21, she was still waiting, and angrier than ever before. Despite concerns about her young son, Carolyn considered donating one of her kidneys, but she wasn’t a suitable donor. And Keysha’s brother was too young.

Lone pink flower covered in dew shows loneliness end stage renal disease

Credit: philipschwarzphotography.wordpress.com

Soon after her 22nd birthday, Keysha began to refuse her medications and talk about wanting to die. Carolyn sought psychological counseling for her daughter, but Keysha refused to participate. Keysha’s doctor prescribed antidepressants and began tapering her steroids, thinking that they were contributing to her sense of despair.

But nothing seemed to help. Despite her mother’s pleading and her doctor’s dire warnings, Keysha began skipping her dialysis, first one treatment, then for several days in a row. She became more and more ill, and was eventually hospitalized with a pericardial effusion, a life-threatening buildup of fluid around her heart. Two days later, despite dialysis and emergency surgery, Keysha died.

I still miss her every day,” Carolyn says, fighting back tears. “I miss the girl she was and the woman she could have become. All she needed was a donor. Just one kidney. Was that so much to ask?”

There are about 100,000 registered organ donors in the United States today — about 54 percent of all adults. I can’t think of a single reason why that number isn’t 100 percent.

Can you?

Service to others is the rent you pay for your room here on earth. ~Muhammad Ali

About Kathleen

Each month Kathleen Clohessy, R.N., offers a new perspective on living with a terminal illness. Kathleen comes to SevenPonds with 25 years experience as a registered nurse caring for families and children facing life-threatening illness. She began her career in the Pediatric Intensive Care Unit at Nassau County Medical Center in New York. After relocating to California, she spent 15 years as an R.N. and Assistant Nurse Manager at the Pediatric Oncology & Bone Marrow Transplant Unit at Lucille Salter Packard Children’s Hospital at Stanford. She uses her knowledge and expertise to enlighten our readers about the challenges associated with chronic illness and its effects on family relationships.

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One Response to The Endless Waiting of End Stage Renal Disease

  1. avatar Kathleen Clohessy (Blog Writer, SevenPonds) says:

    Thanks Silvia! I try to share stories about real people who have lived with life-limiting illnesses, so our readers know they are not alone in what they’re going through. Being seriously ill can be terribly isolating; I hope this column helps people connect in some way.

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