For more than 10 years, Stu Silberman has lived with a rare kidney disease. After altering his diet, he could continue with normal activities. He noticed the lifestyle change when his kidney was at 15% functioning. Now it’s at 13% or below, and Silberman needs a living-donor kidney.
“I went from not seeing major side effects to going off a cliff,” said Silberman, a former superintendent for Daviess County Public Schools.
He said that he has been “lucky” to have held off this long, but now it is getting worse, and doing simple activities causes fatigue.
Silberman, always the educator, took to social media to teach people about the process of a living donation. He has also posted stories about the paired-donor programs for those that are not compatible to Silberman to basically swap kidneys with another person who is a match for Silberman.
“I’ve tried to get information out about paired donors and let people know about that,” he said. “I also want to get the statistics out about the great need out there.”
According to Life Source, there are close to 90,000 people waiting for a kidney in the United States, and most wait 2-3 years. Silberman’s only options are a living kidney or dialysis.
“Short-term dialysis is not the end of the world, it would keep me alive,” he said.
But he is looking for heroes and angels, which he knows exists simply by the outpouring of support he has received since creating the Facebook page, Kidney for Stu, on May 1.
His May 19 post explained that he continues to learn about the donation process and while he is not privy to the information of potential donors, he understands why the boundaries are in place.
“It is for the protection of the donors, but it is kind of nervewracking to wait,” he said.
In fact, the only way he learns of potential donors is if they let him know, which many have. One from Owensboro contacted him to tell that she had filled out the health survey and Mayo Clinic told her that no potential donors were being tested at that time.
While that sounds disheartening, it means that they have taken the next steps in testing, which include blood tests and physical tests, to see if they move forward to a transplant. If they do not, they start over – a process that can take around two months each time, according to Silberman.
He also wants people to know that if they donate a kidney and later need one, they are moved to the top of the list.
Silberman has been working with Off the List, an organization that serves Northern Kentucky to get off the list and on to living.
“There are a lot of things in the process [of kidney donation] I hope will improve in the future,” he said.
For now, Silberman continues to answer questions and share stories on his page.
“There has been a phenomenal outpouring of prayers, thoughts, kindness, and a lot of love,” he said. “I feel very fortunate people have reached out.”
While he waits, Silberman is getting current on all vaccinations so that he is healthy after the transplant while on immunosuppressants. He wears a mask in public places so that when the time comes, he is ready.
“There are a lot of folks I would call heroes or walking angels out there who have stepped up to help,” he said. “Most talk about the positive impact it has had on their lives as well.”
For those interested in becoming a kidney donor, call the Mayo Clinic Rochester at 866-249-1648.
