Tara was just 14 when she started exhibiting symptoms: fatigue, often cold, unable to maintain weight. The pediatrician attributed the symptoms to puberty, and Tara went about her life as an active high school freshman. The school year had just begun, and she had her eye on making the soccer team.
Until the day she collapsed at school.
That day changed her life forever, first setting off a trip to the local hospital and then a transfer to a major medical center. It didn’t take doctors long to see that her kidneys were not working properly. In fact, a doctor said he had never seen someone with such poor kidney function. Tara needed help, and she needed it now.
Tara and her family didn’t fully understand it at the time, but Tara was starting a medical journey that would require determination, perseverance, and hope.
“It was traumatic for my family and me, but by the grace of God, I had the best medical team. I was out of the ICU in a week, and they stabilized me with dialysis,” said Tara, who is now in her 40s. “And then it was a matter of trying to understand why the kidney failed.”
A diagnosis and the wait for an organ
After undergoing a battery of tests, including imaging, a biopsy, and blood work, Tara was diagnosed with a rare genetic disorder, autosomal recessive polycystic kidney disease. She inherited the condition from her parents, who, unbeknownst them, are carriers of the genetic mutation. Tara is the only one in her family with the diagnosis, which will require medical treatment for the rest of her life.
Early on doctors recommended a kidney transplant, but there was no obvious donor for Tara. None of her family and friends who got tested were a match, and the waitlist was two years. Tara began dialysis, a treatment that filters a person’s blood to rid their body of harmful wastes, extra salt and water. She eventually opted for peritoneal dialysis, a type of dialysis she could do at home each night while she slept. It eliminated the 90-minute trips to Boston for in-center dialysis, allowing her to spend more time at school and feel more like a normal teenager.
She settled into her treatment, undergoing dialysis for two years. And then, she got the call. They had a match. Tara and her parents went straight to Boston to prepare for surgery. It was Oct. 1, 1994.
“I went from being very calm to being extremely anxious and overwhelmed,” said Tara. “I had gotten used to dialysis, and it was part of my routine. But having a transplant was new, and it came with its own risks and uncertainties.”
In the 1990s, transplant matching wasn’t as sophisticated as it is today, and Tara’s body immediately began trying to reject the organ. For Tara, that meant blood tests and investigational medications, among other things, to try to keep the transplanted kidney from failing.
“I was literally in and out of the hospital for the next three and a half years,” she said.
Tara’s treatment plan also included biopsies, during which a sample of kidney tissue was collected to monitor the health of the kidney. The procedure takes about half an hour and uses a special needle. Biopsies are important tools for doctors to access kidney health. They are safe procedures and in rare cases result in complications. Patients can experience discomfort, and in Tara’s case, one biopsy resulted in internal bleeding.
That same biopsy also revealed her body was chronically rejecting the kidney. Tara would need to go back on dialysis at some point in her future.
“It was like a double whammy,” Tara said. “Not only did I have a significant complication, but I also got the worst news.”
Tara eventually went back on the transplant list and resumed dialysis. Now a college student, she opted for in-center hemodialysis, which was more compatible with dorm life. After another two years on dialysis, a relative who was related through marriage, would become a kidney donor.
Tara underwent her second transplant Sept. 7, 1999. She has had the kidney for almost 23 years.
Monitoring the transplant
Tara’s perspective on organ transplants comes not only as a transplant recipient, but also as a registered nurse and transplant coordinator. After spending years working with transplant patients in hospitals, today Tara is a clinical operations coordinator for Natera.
And she can identify with the twists and turns of the transplant journey.
“I always tell my patients, ‘Transplant is an amazing gift, but it's not a cure,’” she said. “It’s also a lot of work, but thankfully there are new tests for patients like me that can help provide peace of mind.”
Transplant patients like Tara and physicians understand the importance of monitoring and preserving the function of a transplanted kidney. Tests like Prospera can provide an indication of whether a patient is experiencing active rejection or other types of kidney injury. In some cases, the Prospera test can also provide a safe alternative to biopsies.
The Prospera test uses a single blood draw to measure the amount of donor DNA from the transplanted kidney present in the patient’s blood. This helps the care team assess all types of rejection more precisely than available standard assessment tools. Like other regular monitoring tests, Prospera is recommended for periodic use over time as directed by a patient’s doctor.
Natera also makes testing convenient by coordinating blood draws around a patient’s schedule — at a certified laboratory nearby or with a blood draw specialist who can come to the patient.
“It's just a game changer,” Tara said, “And it really does help me sleep at night knowing that things are good, my kidney is good.”
An active role in care
Tara credits her chosen career path in part to her team of medical professionals who involved her in her care, even as a teenager.
“They made me feel like I was a key member of my medical team,” she said.
That sense of empowerment is something she hopes to help pass along to others today.
“It's so important patients feel involved and empowered with their medical care, because it is scary. It’s overwhelming and foreign,” Tara said. “But playing an active role with the care team in decision making is motivating and essential to achieving the best health outcomes.”
Getting started with the Prospera test
The Prospera test is available through your doctor or the care team at your transplant center. If you are not sure if your provider offers the Prospera test, you can contact us at 650.273.4468. To learn more about the Prospera test, visit www.natera.com/prospera.
Prospera has been developed and its performance characteristics determined by the CLIA-certified laboratory performing the test. The test has not been cleared or approved by the US Food and Drug Administration (FDA). CAP accredited, ISO 13485 certified, and CLIA certified. © 2022 Natera, Inc. All Rights Reserved.