Nicole Leonard had been feeling fatigued, but not really sick, before waking up in December 2022 with blurry eyesight. A trip to the emergency room that morning changed everything.

After an Uber dropped the Lakemoor woman off at Northwestern McHenry Hospital, a nurse took Leonard’s blood pressure and lab tests were started.

“They could tell based on the lab results, I was in end-state renal failure,” Leonard said.

That was when Leonard found out she has focal segmental glomerulosclerosis, or FSGS.

“It causes scarring of the tiny filters in your kidneys that process out the toxins,” she said.

The disease does not have a known cause – and its symptoms progressed quickly. That ER trip led to a catheter surgically implanted. Leonard began dialysis immediately.

She was released to go home the following month, but now, every night, Leonard hooks herself into a continuous cycling peritoneal dialysis machine for at-home dialysis. For 10½ hours, Leonard is hooked up to cords, two 6-liter bags of sugar solution and a catheter in her abdomen.

Leonard, 32, has been on the kidney transplant list for the past two years and expects another four- to six-year wait. But initially, she said she was not as concerned about getting a kidney.

“I went for a couple of years not taking any steps. I thought it would be more of an easy process. I have family and friends. But once you start diving into the requirements for a living donor ... it takes a lot of time and resources to get the testing done, and going under the knife is a scary process,” Leonard said.

Now, she’s created a website, kidney4nicole.com and is mailing out cards in hopes of finding a living donor sooner.

“It takes somebody who is unusually brave and a little crazy and generous beyond the normal margins,” Leonard said.

When Leonard first came in with failing kidneys, “there were really not too many warning signs,” Dr. Farhan Bangash of the Kidney Care Center in Crystal Lake said.

At-home dialysis “is not easy by any means, for anyone,” he added. Patients have to be organized, compliant and willing to tie up their evenings at home.

“Look where all of us are in our 30s. At 9 p.m., your life has to stop and be at home, getting ready for dialysis,” Bangash said. While it can be tailored to the patient – like doing the treatment during the day if they work nights – it still means being hooked in for upward of eight hours.

For most people suffering from kidney disease and in need of a transplant, dialysis is the last step.

“This is a different situation,” Bangash said. Leonard “was a healthy young woman, and all of the sudden ... her kidneys were in failure. Her kidneys did not recover.”

Leonard did go to family in hopes of finding a donor.

“Both Mom and Dad ... they have their own health issues, so they are disqualified,” she said. Her brothers have families of their own, and cannot take off six weeks “leaving their wives and children without support.”

She even opted into a program that would allow a person who is Hepatitis C-positive to be a donor.

“People used to die of Hep C, but it is curable now. They can take medicine,” Leonard said.

But with more people in need of a kidney opting into that list, the wait time is just as long as for any deceased donor, and the transplant list is growing longer and longer.

Another concern for Leonard is how long the at-home dialysis will work.

“That is something I don’t like to thing about. The benefit is that I am young and have more resilience that older patients don’t have,” Leonard said. “If it stops working, I would have to transition” to traditional dialysis. That can mean going into a clinic for four to five hours a day, every day.

She encourages anyone who has thought about donating, or who wants to help her, to log on to nmlivingdonor.org to start the process.

Donors are protected with extensive testing to ensure they can safely donate.

“All of the transplant centers do their due diligence, so a donor lives a completely normal life after [donating] a kidney,” Bangash said. “They are going to be evaluated in a safe way.”

Studies of living kidney donors also report they see it as a positive experience, Bangash said.

“If you donate, that becomes part of your identity,” the doctor said. “It gives people confidence and joy – a purpose in living.”