'We have to be at the table': Ashli Littleton's experience sharing her kidney disease story with Congress

"The nerves were through the roof!" Ashli Littleton said when describing how she felt walking into the Longworth Building on Capitol Hill. She was there to provide testimony before the U.S. House Ways & Means Subcommittee on Health. Before the hearing started, Ashli was brought to the room in which she would present, theoretically without the pressure of the other people there. 

"I think they thought that would calm me down and make me a little less anxious," Ashli explained. "However, that room was huge and I thought, 'y'all, this did not help me at all.' If anything, it made me even more nervous because it is a giant room."

Ashli was in Washington, D.C. for the "Health Subcommittee Hearing on Improving Kidney Health Through Better Prevention and Innovative Treatment." Her nerves were understandable since it was the first time in years that the committee scheduled a hearing related to kidney disease, which affects over 35 million Americans. 

"I just knew that I needed to tell my story," said Ashli. "And at the end of the day, that was all that I can do: share my story and my experience. And I think that helped me calm down a lot."

Fortunately, Ashli has experience sharing her kidney disease journey. As an AKF Ambassador, she joined AKF in Nashville, Tennessee to advocate for legislation that would remove barriers for people in the state who want to become living organ donors. "That was a very unique experience and a lot of fun, I have to say."

This wasn't even her first time speaking before Congress. 

"I've spoken to Congress one other time after COVID," Ashli explained. At that time, she spoke about how home dialysis, both peritoneal and home hemodialysis, helped her stay safe during the pandemic. However, since the hearing was during the pandemic, she participated virtually. "It was online, so that was a little different."

Ashli was first diagnosed with kidney disease in 2017 when she went to the doctor to check on her high blood pressure, which she had been managing for a few years. She also has polycystic ovary syndrome (PCOS), which led to uncontrolled blood sugar and eventually diabetes. Despite living with two high risk factors for kidney disease, Ashli said no one had ever spoken to her about that possibility. Her kidneys failing "didn't even cross [her] mind."

"Everyone always talks about stroke and heart attack," said Ashli, referring to the possible risks of high blood pressure. "That's what I kept hearing, stroke and heart attack. But never kidney issues or anything like that. I had no idea that it could cause the kidney damage that it causes."

Ashli was told that her kidneys were failing — although the doctor did not tell her what stage of kidney disease she was in — and that she would likely need to do dialysis treatments or receive a kidney transplant in the next 10 years to survive.

"By this time, I had just graduated college, I'm trying to find myself, trying to figure out what I'm doing with the rest of my life," said Ashli. "So having this brought on to me, it didn't seem real. It almost seemed like something that I can just take a pill for, and my kidneys will come back. I didn't understand how serious it was."

Less than a year later, Ashli had to start her dialysis treatments. 

"I think I was in shock," Ashli said. She had done an education class on dialysis and had seen the center, but she did not expect to be there as soon as she was. "There was a little bit of sadness, a little bit of denial. And you kind of start wondering, 'is there something I did or is there something I could have done differently?'"

Fortunately, Ashli's work as a pre-school teacher helped her through the difficulty of starting dialysis treatments, as her little students "made it easier to bear." She did in-center dialysis treatments before switching to peritoneal dialysis and then home hemodialysis. In 2022, she received "the call" for a kidney transplant. 

"I call it the Queen's kidney because I got the call the day the Queen passed away," she said. Unfortunately, it was a "sleepy kidney," and never began working properly. It was ultimately removed two weeks later. Ashli remains active on the transplant waitlist today.

Ashli's experience "crashing into dialysis" is, unfortunately, not uncommon. It is part of what motivated her to become an advocate for people living with kidney disease. "I've always wanted to share my story and get the word out about kidney disease," said Ashli. "Just from my experience, there's a lot of people that have no idea what we go through on a daily basis or even what it is or how you can even get kidney disease. I just feel like the stories don't get shared like they should." 

It's crucial for legislators to hear the patient voice before making policy decisions, she said. 

"I think when they're going into these rooms and they're making these new laws or making decisions, you have to have the patient's input on what we need going forward," Ashli said. "I think it would be ignorant on their part to just assume that this is what patients need and not hear from us at all. So, we have to be at the table, so that those laws are getting made with an actual person in mind and not just this imaginary patient. A real patient."

Now that the hearing is done, Ashli plans to continue advocating, joining AKF at our Kidney Action Summit in May. 

"I want to see more prevention, more education and more communication about kidney disease overall in the U.S.," she said. "To keep as many people off of dialysis as possible. But it starts with educating people and getting the word out there about the causes and how to prevent it."

After finishing her presentation to the Ways & Means committee, Ashli recalled with a chuckle, "I don't know if I was breathing the whole time I was in there and during the testimony. I remember reading it and I remember answering the questions. But if I was breathing, I have no idea."