FIGHTING FOR THE VOICE OF PATIENTS –
AAKP AMBASSADOR NIESHA NEAL’S STORY OF HEALING AND HOPE
By Deborah Pelaez, aakpRENALIFE Independent Writer
Niesha was just 13 years old when she was diagnosed with type 1 diabetes. Throughout her teenage years, she did not make the lifestyle changes needed to support her health as she now understands she should have. She did not check her blood sugar regularly, exercise, or make changes to her diet to prevent complications like high blood pressure or kidney issues.
As a young adult, Niesha had two baby boys, less than a year apart. During both pregnancies, she developed pregnancy-induced high blood pressure or pre-eclampsia. While still a college student, in 2013, Niesha learned that her unmanaged diabetes and high blood pressure had led to stage 3 kidney disease. In 2015, when she was just short of graduating college with plans to attend law school, Niesha got sick. Her husband took her to the hospital where they learned her kidneys had failed and she would need to start dialysis.
Although Niesha’s father-in-law and brother-in-law were on dialysis at the time of her kidney failure, she did not know much about the condition or its treatment options. She started in-center dialysis three days a week and continued taking college classes. She studied, did homework, and even took some exams from her dialysis chair. It was sometimes hard for her to type due to the dialysis equipment and other days it was hard to concentrate, but she completed all her classes and received her Bachelor of Science degree in Criminal Justice.
At her dialysis clinic, Niesha saw and heard things she did not like. She watched as fellow patients struggled to communicate their needs to the doctors and staff, and she offered to help them. She became known as the “patient voice” at her clinic.
After about six months of in-center hemodialysis, Niesha started learning about other dialysis modalities. Motivated by her need for more control over her health and to avoid hospitalization, she spoke to a nurse about peritoneal dialysis (PD). This nurse, who Niesha now refers to as her sister, trained her on PD. She was on PD for about two years. She enjoyed more freedom, flexibility and a better quality of life, including going on a family trips to Kentucky, Michigan, and Florida. However, she eventually ended up back in in-center dialysis due to gastrointestinal symptoms and rising blood sugar levels.
Niesha’s former PD nurse and lifelong friend told her about a kidney patient opportunity to join a focus group needing patient insights with the ESRD Network (End Stage Renal Disease Networks are local organizations across the U.S. that promote safe, effective, efficient, patient-centered, timely, and equitable health care for all ESRD patients). Niesha signed up for the focus group with Independent Peer Review Organization (IPRO ESRD Network), and she discovered how much she really loved being a voice for patients.
Meanwhile, Niesha was also waiting for a kidney and pancreas transplant. Due to her type 1 diabetes, both organs would be transplanted simultaneously (SKP: Simultaneous pancreas-kidney transplant) to allow restoration of normal blood sugar levels and kidney function. Niesha had seven unsuccessful transplant calls in five and half years, which took a toll on her emotional and mental health. The transplants were not able to take place for a variety of reasons including one of the organs not being vital or due to a sickness Niesha was temporarily experiencing. At one point, Niesha became frustrated and wanted to quit dialysis altogether. She went to a hospital for a mental health examination to stop dialysis, and it was there that her spark to fight for patients’ rights and the patient’s voice was reignited. She got back the hope she had lost during the many years of being let down by transplants that were not meant to be.
Finally, on June 18, 2021, Niesha received her kidney and pancreas transplant, which she named “Ren and Stimpy.” This date was special to her for many personal reasons: it was the day her son got his driver’s license, and it was also the date of her late mother-in-law’s memorial. It was also uniquely special because it was exactly four years after she got her first unsuccessful transplant call in 2017.
Niesha describes post-surgery as “rough.” After receiving her transplant, she underwent plasmapheresis, which caused her to be in a medically induced coma from complications. She stayed in the hospital after transplant for 21 days.
Plasmapheresis filters blood and removes harmful antibodies, similar to dialysis but removing only the plasma portion.
Today, her focus is on kidney patient advocacy and domestic violence survivor support, as a domestic violence survivor herself. She is a Master Certified Life Coach and an entrepreneur. Her company is called Exhale & Empower and supports people going through health challenges or domestic violence recovery.
Her advocacy work with the IPRO ESRD Network, the ESRD National Coordinating Center (NCC), Dialysis Patient Citizens, and as an AAKP Ambassador also allows her to share her kidney story and make a difference in the lives of patients. At the 2024 AAKP National Patient Meeting, the IPRO ESRD Network 9 team and Niesha were honored with the Dominick Gentile, MD Memorial Award for developing the Kidney Compare application, a tool helping patients navigate transplant options.
IPROs Kidney Transplant Compare is a mobile app and website that empowers patients, families, and caregivers to control their transplant journey.
https://transplantcompare.org
Niesha’s message to patients for a healthy New Year:
• Focus on self-care moments—little moments every day can make a big difference.
• Trust the process and be patient—wherever you are in your journey is where you are meant to be right now.
• Learn how to let go—whatever is not serving you at this time is OK to let go of.
• Seek help for any mental health support—find a dedicated person to talk to or a medical professional you trust to help you through your emotions.
This article was originally published in the Jan./Feb. 2025 aakpRENALIFE magazine.
