A Peoria man has been searching for a kidney for years, and is hoping his daughter can finally be a match.
Rob Tilton was diagnosed with Polycystic Kidney Disease (PKD) at age 16. Often, the disease gets passed down from parent to child, which was the case in Tilton’s situation.
“My father was diagnosed. He had high blood pressure, and they couldn't figure out what was going on with that. So, they diagnosed him with PKD. And then when he was diagnosed, my sister and I, we were both sent in to be checked out, and so we were both diagnosed with PKD at the same time,” Tilton explained.
PKD is a disorder in which clusters of cysts grow on the kidneys, which cause them to enlarge and function less effectively. While a normal kidney is about the size of a fist, Tilton said his are about the size of footballs.
“'I've got some fairly large kidneys, and those are not necessarily that large for someone with PKD. I mean, I've seen some pictures of really large kidneys, like 40 pounders or so. Mine are not that big,” Tilton said.
Although not as large as some other cases of PKD, Tilton’s kidneys are still only functioning at about 13% of what they normally would. His daughter, Jessica Tilton, is a Bradley University alumnus who now works at the institution as a biology professor. She explained a bit of the science behind how people get PKD, and what it does within the body.
“In our family, it was a spontaneous mutation that started (with) my grandpa,” she said. “And that actually counts for, I think, 25% of PKD cases, which is incredibly high…if one parent has it, the child is very likely to get it if they get one allele…So I was genetically tested and so we're both of my younger sisters, and only one of us has it. It's my younger sister.”
Jessica explained when the cysts grow, they take over the healthy nephrons in your kidney. A nephron is the functional unit of the kidney.
“The nephron is just the cell…and that filters your blood. So that pulls out any excess ions that you're not needing. It helps create a really concentrated urine, and if you're not able to create this concentrated urine, you're keeping all these different ions and stuff in your body,” Jessica said.
When the ions become trapped in the body, they build up over time, raising blood pressure. The cysts that form also can rupture causing pain. While there is technically no cure for PKD, many people who have it eventually need to have kidney dialysis, or a transplant.
“So, the kidney transplant is essentially the cure…and it replaces the non-functioning kidney…you only need one functioning kidney to survive, because with two kidneys, in general, you actually only need 50% of one kidney,” Jessica noted.
Kidney donation
Kidneys can be obtained in a couple different ways. There’s deceased donation, in which someone or a family can donate the deceased person’s kidney after they die. There’s also living donation, and Jessica is currently undergoing the process to become a living donor. This is her second time trying to become a donor, as she was rejected the first time due to residual complications she had from an accident. The process to become a donor is quite rigorous, according to Rob Tilton.
“They want to make sure that as a person donating, that donating a kidney is not going to impact your life. So, they want to make sure you're perfectly healthy and whatnot. So people have been excluded from donating for a lot of various reasons. One person was on Prednisone for a dental issue, and they excluded her because of that,” he said.
Jessica is trying to do something called direct donation, which means she only wants her father to have her kidney if she ends up being a match for him. There’s also an option to do pair donation, which essentially means if she ends up not being a match for her father but is a good match for someone else who needs a kidney, her kidney will go to them. Because of that, her father would be guaranteed that he would eventually get a living donor who is also in that same situation.
“There's over 100,000 individuals currently waiting for just any organ, but about 90% of the individuals on the list are waiting for a kidney, and it is the most in demand organ,” noted Jessica, who compared the process of becoming an organ donor to a job application.
“Deceased donation is a volunteer opportunity where anyone can do it. There's no criteria that would exclude you. But for living donation, they're looking for specific criteria, and they want to make sure you're the perfect fit,” she said.
This means a lot of testing for the individual trying to become a donor. Jessica said this includes things like a psychological evaluation over the phone, virtual appointments, filling out extensive medical history, and eventually doing in-person testing as well.
“I'm going up to Mayo Clinic to finish all the in-person testing,” Jessica said. “And they're actually going to look really thoroughly at me. They will analyze even the arteries and veins that go to my kidneys to make sure I have the same number that my dad would have… they look at absolutely everything.”
In addition to matching arteries and veins, the donor also has to have matching tissues and blood type to the potential recipient. Rob Tilton said he has had many family and friends go through this process.
“I'm just so incredibly grateful for everyone that's come forward. And it takes a special person to step forward and say, 'You know, hey, I want to give, you know, so others can live,'” he said.
Jessica said there are some barriers and misconceptions that often prevent people from considering being a living organ donor.
“People are worried that it's going to affect their health…and I told them they wouldn't be doing this operation if it wasn't going to have a great outcome for me as well, and that's been proven by the Mayo Clinic, especially the one in Rochester. That's the number one transplant facility in America. And they wouldn't go through the surgery if they even had a thought that you would have a long term complication,” she said.
The Mayo Clinic published a study last year that looked at the likelihood of long-term complications as a result of donating a kidney via surgery. They surveyed more than 3,000 living donors over the course of the 10 years after they had the surgery.Only 2.5% had major complications, and all of them recovered.
“To me it’s, you know, why wouldn't you try because they'll reject you if they even think that you're not going to be a good candidate…it is a safe procedure. And if you are interested, I would suggest looking through Mayo Clinic,” said Jessica.
For now, Rob Tilton is on two kidney transplant lists, one at Mayo Clinic and one at Barnes-Jewish Hospital in St. Louis.
“The Mayo list, they said that the waiting time is between five to seven years. Barnes is a little bit quicker; it says between three and five years,” said Tilton.
Of course, if Tilton is able to find a living donor, the process will move along a lot quicker.
“If someone's out there and…you're interested in donating a kidney to my dad, please sign up for it. Just because I'm going through it doesn't mean I'll be a match…sign up if you're interested or considering it. You never know what could happen,” Jessica said.
Rob Tilton has a website for those interested in seeing if they’re a match. His insurance covers all medical costs. For those interested in learning more about organ donation and registering, click here.
