Celeste Castillo Lee.

Melanie Maxwell | AnnArbor.com

Celeste Castillo Lee spends 10 hours a week hooked up to a dialysis machine to receive treatment that a healthy kidney would otherwise do for her.

As an end-state kidney disease patient, dialysis has provided life-saving treatment for Catillo Lee since the failure of her kidney transplant in 1994. Four days a week, she visits the University of Michigan Dialysis Clinic-Ann Arbor, working around a busy personal and professional life to receive her treatment.

At the clinic she has a needle inserted into the fistula in her arm and has her blood pulled out. The blood is run through the machine, where any excess fluid and waste is removed, and it is then returned to her body.

For Castillo Lee, the quality of life she enjoys as a result of successful dialysis treatments is still overshadowed by the realization that her body is down to its last usable site to hook up to the machines. She tries to focus on positive things rather than the consequences of losing this vital lifeline.

“The bus is behind me, and I know it is,” she said. “It’s just a matter of time before it speeds up.”

March is National Kidney Month, and Castillo Lee is continuing her efforts to help educate others about kidney disease awareness and prevention.

“I think the main thing is to understand about your kidneys and your health and to take care of yourself,” she said.

Becoming involved with patient advocacy wasn’t something new for Castillo Lee when she became a kidney disease patient herself. She recalls feeling a desire to help others at a young age. When she was 8 years old, she was inspired by a Jerry Lewis Muscular Dystrophy Telethon, and having nothing else within reach, quickly scribbled the phone number down with a crayon on a box of Cap’n Crunch cereal.

“I remember writing it right on Cap’n Crunch’s head,” she said with a smile.

After ordering a carnival kit from the telethon, Castillo Lee worked to raise $600.

Castillo Lee’s introduction to dialysis came when she was a high school senior and was diagnosed with Wegener’s granulomatosis, an autoimmune disease that caused her kidneys to shut down. She worked dialysis treatments around a busy college life until she received a kidney transplant when she was 20 years old.

The transplant went beautifully, she said, but after six years, it was becoming apparent that her body was rejecting the kidney, and she was placed back on the transplant list. Eight years after she received the transplant, her new kidney was no longer working, and she was back on dialysis.

After being away from dialysis for so long, Castillo Lee was not satisfied with the quality of treatment she came back to. She was not happy with the cleanliness of the procedures, but she was even less satisfied with the apparently lack of training some of the staff working with her. Dialysis technicians were not even required to have a license until 2008, after the passage of the Kidney Care Quality and Education Act.

“The lady who does my hair has to get a license, but the person sticking a needle in my arm didn’t need one,” she said.

As she became frustrated with her experiences, Castillo Lee reached out to the National Kidney Foundation to see what she could do to make a difference.

As a chairperson of the National Kidney Foundation Patient and Family Council Executive Committee, Castillo Lee has been involved in kidney related advocacy in Washington, D.C., which contributed to the Kidney Care Quality and Education Act and other patient empowerment initiatives.

Working on a national level is just part of Castillo Lee’s goal of helping kidney patients. Locally she also works as a patient advocate to help others understand how to protect themselves.

While Castillo Lee is a living example of how dialysis can allow for a productive life, she also believes that properly educating patients in early stages of kidney disease will allow them to stay off dialysis. On a grand scale, keeping patients off dialysis is her goal.

On the smaller scale, she is able to share the knowledge gained from nearly 30 years of fighting kidney disease, such as which kind of tape to use on the skin to avoid needless suffering.

“Celeste really is a role model,” said Ellie Schlam, director of external communications for the National Kidney Foundation. “She understands not just what to do for herself, but how to help others.”

According to the National Kidney Foundation, more than 26 million Americans have chronic kidney disease and many don’t know it. As part of their efforts to promote kidney health and awareness, the NKF is offering free screenings on and around World Kidney Day, Thursday, March 10.

The free screenings are designed to make people aware of the health of their kidneys through a GFR, or glomerular filtration rate, test. The GFR test is calculated from a variety of factors including a blood test, waste production, race, age, gender and other factors. Knowing a GFR score can help in early detection of kidney disease.

“In other words, knowing your GFR can save your life,” said Dr. Joseph Vassalotti, chief medical officer for the National Kidney Foundation, in a NKF press release.

In addition to knowing your GFR score, the NKF recommends maintaining a healthy diet and body weight, monitoring blood pressure, not smoking and being tested for kidney and heart health.

For Castillo Lee, it’s also important for people to understand that if they do have kidney disease, they can still lead a productive life. For the last 30 years she has fought kidney disease while going to college, getting married, and maintaining a successful professional life. She is currently the Senior Project Manager of the University of Michigan Office of the Provost.

And while she acknowledges that dialysis is time-consuming, it doesn’t stop her from living her life.

“She’s really inspiring to others who see that that they can still have a life and find fulfillment in work and family,” said Schlam.

Andrew Turner is an intern with the Community Team at AnnArbor.com. Have a neighborhood news tip? Email community@annarbor.com.