LAKE CHARLES, LA (KPLC) - It’s a disease that affects thousands of people across the country, but it’s one that, oftentimes, you don’t see coming.
Kidney failure doesn’t show its symptoms until it’s usually too late, and a transplant or dialysis is needed.
Just under 100,000 Americans are currently awaiting a kidney transplant, and many of them have been waiting for several years.
Unfortunately, only a handful of those people will receive the life-saving organ they need.
Jerome Scalisi is an 80-year-old Lake Charles native and has been on dialysis now for four-and-a-half years.
His kidneys started failing several years ago, in large part, because of his diabetes. Now, they can’t function on their own.
Suzanna Morton is a community educator with the Louisiana Organ Procurement Agency and says right now, there’s about 115,000 people who need life-saving organ transplants in the United States.
Scalisi said he was told that the waiting period is right at four-and-a-half to five years, but he didn’t feel like sitting around and waiting. He decided to make a custom shirt to get his message across that reads, “I’m looking for a kidney" in big block letters on the back.
“I was wearing it one day and I said, well, why don’t I get these letters put on here by a shirt person that says, ‘I’m looking for a kidney’ because I am looking for a kidne?" Scalisi said. "I feel a little bit conspicuous wearing it, but how in the hell am I going to get my message across if I don’t wear it?”
Jerome walks around town, proudly wearing his custom shirt, hoping maybe it’ll make a difference.
“If anybody sees this, it might spare somebody. If I don’t get it, it might get them to think about kidney donation, or donations of any sort,” Scalisi said.
“I love it," Scalisi’s son, John, said. "It’s funny, but at the same time it’s the truth.”
John has been by his father’s side through it all.
“That’s my hero,” John says.
The Scalisis know all too well the effects of kidney disease. Jerome’s younger son, Dennis, also developed kidney failure, and passed away in 2013 from the disease.
“It was really rough," said John. “Then watching Dennis go downhill and just trying to be there for him... it was hard. I know it’s brought Daddy and I closer together. Daddy and I are closer right now than any time that I have been in my life.”
So, what is this disease that over 25 million Americans are suffering from?
Dr. Abdel Abu Shamat, a nephrologist at The Kidney Clinic says kidneys are a filter.
“They filter the waste products out,” Dr. Abu Shamat said. "When that function is lost, the cleaning of the blood is lost, then the toxins will start to accumulate and stay in the blood.”
Which is why thousands of people, just like Jerome, are put on dialysis.
“Dialysis means that people would need to be on an artificial kidney to take the place of what their native kidneys used to do,” Dr. Abu Shamat said.
Jerome goes to dialysis three days a week on Tuesday, Thursday, and Saturday, which means waking up at 4 a.m.
“It’s no problem," Jerome said. "I have two alarm clocks in case one of them fails. I wake up halfway through the night and stick my hearing aid in my ear, so I’ll be sure to hear it.”
However, he, along with many others want a better quality of life, without having to rely on a machine to keep them alive. That’s where organ donation comes into play.
“In 2018, we had 189 organ donors in the state of Louisiana," Morton said. “From those 189 heroes, 600 transplants happen.”
Morton says almost half of licensed Louisiana drivers are organ donors. So, why are so many people still in need of organs?
“The unfortunate thing is only two to three percent of those people will actually have the potential to become donors, and that’s because you have to die a very specific way," Morton said.
"You have to have an injury to your brain that causes swelling, that eventually leads to brain death, and you also have to die in the hospital.”
“The reason those of us who die from cardiac death can’t be organ donors is because once your heart stops beating, everything shuts down.”
Which is why living donations can sometimes be the quicker route... if you can find a match.
However, even if you can’t, there’s a system in place that can still be life-saving.
“If you donated your kidney to me and I couldn’t use it, but you agreed to donate the kidney into the program, then they would go get me a kidney right then that I was compatible with, and I would have it,” Jerome said.
Until then, Jerome says he will keep walking, keep going to dialysis, and keep praying.
“I don’t have any secret conversations with God, but I know I see signs every day that he’s there and he’s watching over me," Jerome said. "As long as I’m here and I can move, my psyche and my makeup and my mind won’t let me be negative about too much.”
It’s that positive attitude that’s kept his spirits and the spirits of those around him so high.
John and Jerome say they are just taking everything day by day and not taking anything for granted.
Jerome says he just wants his shirt to make other people think about organ donations and he hopes that it can help save someone’s life one day.
Doctors say donating a kidney has no long-term effects on your body. If you’d like to learn more about becoming a donor or organ donations visit the Louisiana Organ Procurement Agency’s website HERE.
You can sign up to become an organ donor at the Office of Motor Vehicles, or through a form on LOPA’s website, which you can find by clicking HERE.
Morton says the most important thing is to have a discussion with your family members about organ donation.