What It’s Like to Wait for a Kidney Donor
It's harder to get a kidney than a heart -- and the disease is only becoming more common
Ed Sitter was born with only one kidney, but he didn’t realize that was the case until he was 63.
“After months of going to nephrologists, one of them figured it out,” he remembers. “The good news was that the kidney I did have was quite large, and that’s why it hadn’t been diagnosed before — they kept seeing one end of the kidney and thinking it was my other one. The bad news was that I had chronic kidney disease, stage 4.”
Earlier that year, Sitter, a former computer operations manager at the New York Stock Exchange who lives in Staten Island with his wife Diane DiResta, ended up in the hospital after a ministroke. He was at a diner, and all of a sudden he couldn’t speak without slurring. Ed also had type 2 diabetes and artery disease, which are both the most common risk factors for kidney disease, and reasons the diagnosis is often not immediately clear.
“Kidney disease is insidious — it comes upon you suddenly and you don’t know where it came from,” he said.
Sitter had been retired for about seven years, happy to have more time to spend with Diane, to watch the Mets, and to dream about his goal of finally breaking 80 on the golf course.
Now his goal is to get a new kidney.
Today is World Kidney Day, designed to bring awareness to the 850 million people worldwide living with chronic kidney disease. About 37 million of those are Americans, including Selena Gomez and Sarah Hyland, who have both received kidney donations.
Sometimes called chronic kidney failure, the disease occurs when your kidneys no longer filter waste, fluids, and electrolytes from your blood, allowing those fluids to build up in your system.
Many individuals with early-stage kidney disease go undiagnosed because a person can lose up to 90 percent of their kidney function before experiencing any symptoms.
Dialysis can rid your body of those toxins, but it is far from a perfect solution. Sitter spends four hours a day, three days a week, getting in-center dialysis treatments. It’s essentially a part-time job, with serious side effects.
“The fatigue is like nothing I’ve experienced. Unlike athletic fatigue, from which you can rebound, this fatigue is all-encompassing and debilitating. It’s life-altering,” he said.
On top of that, the procedure only works about 15-20 percent as well as a healthy kidney, so dialysis is rarely a long-term solution to kidney failure. That’s why it’s so important to have kidney function testing done if you’re at risk due to diabetes or high blood pressure. The earlier the disease is detected, the better the treatment options are to slow down kidney failure progression.
“If you hear anything bad going on with your blood pressure and blood sugar, I’d ask to see a nephrologist,” Sitter said.
There have been some positive developments, however. Scientists at the University of California, San Francisco, are working to develop an artificial kidney that replicates many natural functions of the kidneys, and they expect to be in the final stages of clinical trials by 2021. And Congress recently introduced the “Immuno Bill,” which would extend Medicare coverage for antirejection drugs transplant recipients depend on.
For now, though, Ed’s best bet is still a kidney donor. He’s been on the donor list at Cornell since 2016. Last year, they told him the wait was eight to ten years.
“The whole process is shrouded in a lot of mystery because of efforts to be fair and equitable. You won’t get direct answers, which can be frustrating, and fearful,” he said. “It can drive you crazy if you let it. You need a lot of mental discipline.”
Sitter says his faith helps him with discipline, and he relies on his wife as his energy source. For her part, Diane, CEO of DiResta Communications, sprang into action to find a donor. So far they’ve done an event where people were swabbed to see if they were a match for donation, held signs outside the Today Show, made t-shirts for Ed, arranged for billboards in Times Square, published local articles, created a website and a Facebook page, and attended a church where a friend found a donor for another case. She also reached out to Covey for this interview.
“I mention Ed in every networking meeting [I have] and also on podcasts,” she says. “It’s been challenging and sometimes exhausting. There is no one strategy. People have found donors in so many ways.”
“I put my faith in God, and if it’s his will, I will get a kidney, and I’m looking forward to the day that comes,” Ed said. “Subsequent to that, I feel I will always try to spread the word because it’s only a growing problem.”