Jessica & Ashley’s Story: Mother and Daughter Navigate Kidney Transplant Rejection

When Ashley was four years old, her mother, Jessica, noticed her daughter had some physical challenges that seemed unusual.  Ashley’s eyes were perpetually swollen, and she often had difficulty swallowing. Initially, doctors told them that it was allergies, but when the swelling turned into pneumonia, Ashley wound up in the hospital for a week. Tests revealed a shocking diagnosis: Ashley’s kidneys were failing due to focal segmental glomerular sclerosis (FSGS).

“Your world changes in an instant when you get diagnosed with a chronic illness,” Jessica said. “It’s overwhelming when you have the unknown in front of you; it’s scary and you have to adjust.” 

FSGS is a rare kidney disease that causes scarring on internal filtering units that causes protein spill into the urine, and over time, leads to kidney failure. Ashley was told her kidneys would last five years. They lasted six, and at 12 years old, she received a kidney transplant. However, that wouldn’t be the end to her medical journey.

The Road to a Kidney Transplant

Ashley and Jessica navigated a series of medical complications leading up to Ashley’s transplant. She took several medications every day since her initial diagnosis at four years old, and began dialysis when she was 11, a few months before her transplant. When she was notified of her upcoming surgery date, Ashley was encouraged and saw this as her opportunity for a future that looked different than her current reality.

“I was just tired of dialysis, for having to be there three times a week and not able to go swimming, or go to Disney, or anything. I just wanted it to be over with," Ashley said.

Jessica felt encouraged about the transplant, too, despite the unknowns ahead and her lack of knowledge about the specifics of the process. 

“I wasn’t scared, I was hopeful, but I didn’t really know what was in store for us because it was unchartered territory. I didn’t have anybody to talk to about it who had experienced it,” Jessica said.

Motivated to find support for herself and her daughter, Jessica did some research and discovered a community of other kidney patients, who helped the pair navigate the complexities of what was to come. Having a support system comprised of individuals and families, Jessica felt less alone in figuring out the next steps for her daughter and instead, looked at others to emotionally support her. She found community in her local church where members would look after her older son while she took Ashley to appointments, allowing Jessica to be fully present for her daughter. 

A Biopsy and a New Diagnosis

After the transplant, Jessica and Ashley prepared for their new lives. They were excited to go on trips and adventures, and take advantage of opportunities missed during Ashley’s years of treatment. However, underneath Ashley’s excitement was a nagging feeling that something was wrong. A biopsy a few months after surgery would confirm that her body was rejecting the new kidney, sending her into acute antibody-mediated rejection (AMR). An estimated 23,000 people in the United States are living with all forms of AMR¹, a serious complication that can occur after an organ transplant when the body’s immune system makes antibodies attack the new organ, leading to damage and possible graft failure.

The discovery of AMR was a setback for Ashley and Jessica. With this new diagnosis, Ashley is treated specifically for AMR, now on new medications that target the rejection and aim to support her new kidney. But the treatment is comprehensive, with Ashley taking over 20 pills a day and receiving a monthly infusion that causes severe fatigue for days after.

Despite the AMR, Ashley remains thankful for her transplant and the ways it has improved her life.

“The transplant changed my life. When I was on dialysis, I couldn’t go anywhere. Now, since I’m not kind of tied to the treatment [for dialysis], I can go almost anywhere. I’ve gone on a lot more trips now than I have or could have when I was on dialysis, or when I first got the transplant,” she said. 

However, living with AMR still provides a struggle for Ashley, especially with the fear that she could lose her new kidney and have to find another donor. While her quality of life may be better than when she was on dialysis, the intensive treatments for AMR continue to prevent her from experiencing an easy, healthy life.

Growing Stronger Together 

Jessica never expected her daughter’s first 19 years would be as difficult as they have been, but she found power in advocating for Ashley, becoming involved in every step of the process and finding people to lean on for help. 

“I’m one to ask questions, I ask questions all the time,” Jessica said. “When she started dialysis, I started getting to know the families on dialysis and started asking questions.”

Today, scientists and researchers are working hard to develop treatments for AMR, aiming to create a future with improved treatment options for those suffering from transplant rejection. 

“It’s very hopeful that these medications that we have [in clinical trials] for AMR do prolong peoples’ kidney transplants, and helps them have a happy and healthy life," Jessica said.