As many as nine in 10 adults with chronic kidney disease do not know they have it, according to the Centers for Disease Control and Prevention (CDC). That’s an important fact to know during March — National Kidney Month — and all throughout the year.
By the time kidney disease is detected, it is usually in the advanced stages — which means a patient may need dialysis several times a week.
The dialysis process cleans the blood, since the diseased organs cannot filter out toxins efficiently, kidney experts said.
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In severe cases, a kidney transplant may be needed, but that usually means years of waiting for a matching organ donor, said experts.
“The toxins build up in your body and your colorings not good. Your blood is not good. You have no energy,” said Kathleen Gerlach of Greenlawn, New York, to Fox News Digital.
She has reason to know. Gerlach was 18 years old when doctors told her that her kidneys were failing after a severe strep infection damaged them — and that she needed a transplant.
She began dialysis treatments several times a week, hoping that a donor match would surface.
Gerlach said the mere walk to attend classes became challenging for her. “It was really, really difficult,” she said.
“Having that transplant afforded me the opportunity to complete college and become a high school art teacher.”
After a grueling year-and-a-half of dialysis, a deceased organ donor from Chicago surfaced that proved a match.
At 20 years old, Gerlach gained a new lease on life from the transplant.
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“Having that transplant afforded me the opportunity to complete college and become a high school art teacher,” she said.
“And I worked for 32 years.” She stressed how important it was that the donation helped her become a “viable member of the community.”
However, in 2005, at age 50, Gerlach said the transplanted organ began to fail — and she began to become fatigued and to experience swelling.
Her doctors confirmed her fears that she would need dialysis treatment and wait for an organ donor.
She was told the wait could be as long as six to eight years. She feared she would not be able to maintain a full-time job as an art teacher in a high school on Long Island as she awaited a new kidney and received dialysis.
One of her colleagues volunteered to be a living kidney donor.
Then a selfless act changed her life. One of her colleagues volunteered to be a living kidney donor — and instead of a six-year wait, she received a new kidney within the year.
She was able to continue working as a teacher and retire at an age that she chose.
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“When you have a healthy kidney [from] a new transplant, all [things get] turned around. You can live life normally,” she added. “You’re not tired. You have energy. You can do things.”
Born with a kidney condition
John Primavera of Long Island, New York, shared a similar story with Fox News Digital.
He was born with a kidney condition in which his kidneys did not grow. The 49-year-old father and husband received his first kidney transplant at age 14 — but that organ began to fail recently.
Primavera started dialysis and became weaker, which forced him to stop working as a physical therapist assistant at a sub-acute rehabilitation center on Long Island.
He told Fox News Digital he would likely have to wait seven years for a kidney — and that the statistics worked against him.
“Mortality rate on dialysis, unfortunately, is 50% at five years. So with a mortality rate of 50% at five years and many patients waiting seven years for a transplant, a lot of people don’t survive long enough to get to a kidney transplant,” Nicole Ali, M.D., director of kidney and pancreas transplantation at NYU Langone Health in New York, told Fox News Digital.
She is also Primavera’s nephrologist.
She added, “That’s why at NYU we try to get patients transplanted as quickly as we can by importing organs from other states, so they will have shorter waiting times.”
“We try to get patients transplanted as quickly as we can.”
Those waiting times are a nationwide problem, according to the National Kidney Foundation, which said that 12 people die each day waiting for a kidney.
The average wait time for a kidney transplant can be from three to five years — and as long as 10 years in certain parts of the country — a spokesperson for the National Kidney Foundation, based in New York City, told Fox News Digital.
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John Primavera’s best friend for nearly 40 years, Tom Kenny of Babylon, New York, told Fox News Digital that he heard about the waiting period and knew he needed to help his childhood friend. He decided to be a living kidney donor.
The two discovered they not only shared a strong bond of friendship, but were a uniquely perfect match.
“The surgeons said it could not be a better match. It was such a good match, it was as if we were brothers,” Primavera told Fox News Digital from his hospital bed.
The two friends underwent surgery recently week at NYU Langone Health in New York City.
“Tom has given me this second chance at a new and improved life.”
Primavera told Fox News Digital afterward, “We are both doing well, and the new kidney is working great. Because of Tom’s most generous gift of his kidney, he has given me this second chance at a new and improved life.”
He added, “Without this selfless act, I would have waited close to seven years for a kidney and would have had to be on dialysis. With that wait time, I might not have made it to get transplanted.”
Kenny said he was not worried that donating a kidney would affect his own health.
“First and foremost, the medical staff makes the donor’s safety a priority,” he told Fox News Digital. “More importantly, the need for living donors is extremely high. And the ability to help a friend or loved one is special.”
Costs and the loss of wages due to the post-surgery recovery period are barriers to the recruitment of living donors, kidney specialists told Fox News Digital.
To help encourage more living donors in New York, Gov. Kathy Hochul recently signed the New York State Living Donors Support Act into law; it helps cover costs incurred by the living donor.
Besides saving lives, living organ donations also saves money.
Even though he donated a kidney, he could continue with a relatively normal lifestyle.
Each year, Medicare spends around $96,000 per patient receiving dialysis — and roughly $40,000 for a transplant patient, according to the National Kidney Foundation.
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Kenny said even though he donated a kidney, he could continue with a relatively normal lifestyle.
“It’s amazing. It’s a gift of life. To help him in a way in which his quality of life is improved is fulfilling. I am not sure if words can fully describe it,” he said.
What’s up next for the kidney recipients who thought they’d spend years waiting for a kidney?
Kathleen Gerlach, 68, participated in, and plans to continue competing in, the U.S. Transplant Games and the World Transplant Games.
Participants are transplant recipients who compete in Olympic-style games that include, among other sports and activities, swimming, track and field, volleyball and even corn hole.
Gerlach, who holds several gold, silver and bronze medals, said that during these games, there is a parade consisting of living donors as well as the families of deceased donors; they all march into the stadium.
They receive a standing ovation of fans and athletes honoring their tremendous sacrifices.
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Primavera said he will turn 50 this spring. He said he hoped people would learn about his story and consider becoming a living donor or donating their organs when they pass.
“I am forever grateful to my childhood friend Tom for donating his kidney to me,” he said.
“I have a new lease on life — a life free from dialysis. I can enjoy traveling again. I will be able to enjoy life to the fullest and see my daughter Soraya continue to mature and reach all her milestones.”
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Right now, there are 90,000 adults in the U.S. waiting for a kidney transplant — and only 25,000 of those patients actually received a kidney in 2022, according to the National Kidney Foundation.