Ray Jones was 31 when he was blindsided by the news that he had end-stage kidney disease. It wasn’t that he hadn’t been experiencing symptoms: He often felt sluggish and had a hard time catching his breath, and he’d also noticed swelling in his legs due to edema. At the time, though, given that he weighed about 450 pounds, he simply chalked up the symptoms as being weight-related.
In fact, these were all signs that his kidneys were failing.
The official tip-off came during preparation for a dental procedure requiring anesthesia. His blood pressure was too high for the anesthesia to be administered safely, he was told. Jones left the dentist’s office with instructions to visit his physician and obtain medication to bring his blood pressure under control.
That doctor’s appointment didn’t yield a prescription for blood pressure medication, however. Instead, Jones got a phone call about an hour after the appointment instructing him to go to the hospital immediately. “The doctor didn’t even tell me goodbye or anything,” Jones recalled.
When Jones got to the hospital, he found out that he had end-stage renal disease.
Jones was admitted to the emergency room for monitoring while he waited to be seen by a nephrologist. Soon after, a catheter was inserted in his chest so he could start dialysis. Although his catheter was later replaced by a shunt in his arm, it was the beginning of a thrice-weekly dialysis schedule he’d continue for the next decade.
The realities of end-stage renal disease
“It’s not uncommon for patients to have advanced kidney disease and not be aware of it,” said Gabriel Danovitch, MD, medical director of the UCLA Health Kidney Transplant Program. “Like Mr. Jones, many patients present to emergency rooms already in advanced kidney failure.”
When the kidneys are functioning normally, they act as a filter by removing toxins from the blood and transforming them into urine that’s then excreted from the body. As the kidneys continue to fail, however, the body’s ability to filter out waste and release fluids greatly diminishes. People may begin to excrete high levels of protein in their urine and may also notice that their urine contains blood or is dark or foamy. Swelling of the legs and shortness of breath like Jones had been experiencing are also common symptoms, Dr. Danovitch said.
Most patients can continue to function normally until their kidneys are at less than 15% of capacity, he said. As the disease progresses further, their kidneys will require assistance, either via dialysis or a kidney transplant.
Dialysis, which takes over the work of the kidneys, can be done at home but is most commonly performed at a specialized center. The treatments are usually done three times a week, with each session lasting three to four hours. There are about 557,000 people in the United States currently undergoing regular dialysis, according to the 2022 annual report produced by the United States Renal Data System (part of the National Institute of Diabetes and Digestive and Kidney Diseases). However, only a subset of these patients – close to 89,000 as of Aug. 1, 2023 – is on the wait-list to receive a new kidney.
Before patients can be added to the wait-list, they must first undergo medical screening to evaluate whether they’re appropriate candidates for a transplant. Once a patient is added to the list, the wait can be lengthy due to a shortage of available organs.
In 2020, the most recent year for which data is available, there were 130,522 people diagnosed with end-stage renal failure, according to the 2022 USRDS annual report. Meanwhile, the number of kidney transplants in 2021 was 25,487, according to the U.S. Department of Health and Human Services – a record high, and yet not nearly enough to meet the need.
Living donation offers multiple advantages to patients and is strongly encouraged, Dr. Danovitch noted. However, the majority of kidneys used for transplants come from deceased donors, which accounted for about three-fourths of kidney transplants in 2021.
The average wait time to receive a kidney is three to five years, the National Kidney Foundation estimates, but it can be closer to a decade in some parts of the country, including in Southern California.
Waiting for a transplant
“When your kidneys have failed, it’s kind of a shock to know that for the rest of your life, you’re going to have to be connected to a machine or have a foreign object in you that requires taking medications every day,” said Hans Albin Gritsch, MD, surgical director of the UCLA Health Kidney Transplant Program. “That’s a shock to anybody, but particularly to a young person who has their whole life ahead of them,” he said, referring to Jones.
For Jones, who started dialysis immediately, his weight was a complicating factor in being considered for a transplant.
“We encourage people to lose weight before undergoing a transplant,” said Dr. Gritsch, who was Jones’ surgeon. “But it’s not easy when you’re on dialysis and you don’t feel good. Sometimes, if your kidneys fail, you get high blood pressure. And sometimes you get high blood pressure, and then that causes your kidneys to fail. And also when your kidneys fail, you tend to gain weight because you retain fluid. And you can’t participate in sports because you’re heavy. And so it becomes this downward spiral.”
In Jones’ case, he’d been attempting to lose the excess weight on his own but had been finding it difficult to make progress. After a conversation with his nephrologist in 2017, he began to seriously consider gastric sleeve surgery, a bariatric procedure in which a majority of the stomach is removed, enabling significant weight loss.
Again, there were guidelines he needed to meet in order to be considered a viable candidate for the surgery. Jones went on a diet and began working out under physician supervision. “They want to make sure you’re motivated to lose the weight before the surgery,” he explained, “so you’ll keep the weight off later on.”
By 2018, Jones had lost 50 to 60 pounds and qualified for the gastric sleeve surgery. “Once they told me I had to work out, it pretty much just lit a fire within me,” he said. He had the operation that spring; within two to three years, he’d lost more than 250 pounds. “Once they cleared me to work out after the surgery,” said Jones, “I started and never stopped.”
With his weight now within the guidelines, Jones was added to the national kidney transplant list in 2020. By this point, his kidneys had shut down and he was no longer urinating. While he waited for a kidney, he continued to undergo dialysis three times a week.
“I would go there for what they call first shift, which is at about 3 a.m.,” he said. “And I would sit there in a chair being dialyzed, with a machine filtering my blood, for about three to four hours. And because I was going so early, I would arrive ready for work and go straight to work afterwards.”
Despite his efforts, Jones did not have close friends or family members who could safely be kidney donors for him. Meanwhile, given that he’d already been on dialysis for about eight years at that point, he knew his wait time for a kidney wouldn’t be that much longer. Under the rules governing organ transplantation in the United States, Jones’ wait time for a kidney was calculated from when he’d started dialysis rather than when he’d been officially added to the waitlist.
A couple of months after being added to the national wait-list, Jones received a phone call from UCLA’s Connie Frank Kidney Transplant Center letting him know he was an alternate candidate for a kidney.
“I was the backup,” he explained. “It was pretty much already destined for someone else, but I was told that if for some reason they could not get ahold of this person, I would be called as the next person up.”
That follow-up phone call came at about 5 a.m. the next day. Jones was already at work at his job as a store merchandiser. “I got a call saying the kidney had defaulted to me,” he recalled. “I dropped everything and called my wife.” By the next day, he said, “the kidney was in me.”
By chance, Jones had previously reconnected with a childhood friend, Marci Knox, who was a social worker at UCLA’s kidney transplant center. Knox, who’s since retired, served as a liaison for Jones following the procedure, including ensuring he had the support he needed once he returned home.
Although he didn’t know it at the time, Jones’ procedure was the 10,000th kidney transplant performed at UCLA Health. As of Aug. 14, 2023, the program has transplanted 10,215 kidneys.
A new lease on life
While it can take a while for the kidney “to kind of wake up,” Dr. Danovitch said, “usually the patient begins to feel better within weeks, sometimes within days.”
For Jones, the recovery time after receiving a new kidney was quicker than he’d expected. “It seemed like it went by really fast,” he said. “I was back at work – not lifting anything heavy or anything – within two-and-a-half months.”
Right after the surgery, Jones was able to urinate again. “It felt surreal,” he said.
Jones, who describes himself as “very active,” also no longer has the edema, sluggishness and shortness of breath he once had. “I feel brand new.”
Although the anti-rejection medications he takes cause water retention and have resulted in some weight gain, he said, he’s also bulked up from weightlifting. He now weighs about 250 pounds, some 200 pounds less than he used to.
“It took a lot to get here,” Jones said. “This is a really big deal, and people don’t get this type of chance every day. I’m just really thankful – to be the 10,000th recipient is a very special thing, and I was blessed with that.”
Lisa L. Lewis is the author of this article.