Mental health is important for people with kidney disease. Far too many people face kidney disease without enough emotional support, but NKF Peers is working to change...
Kidney Disease and Mental Health: “You Can't Suffer in Silence.”
November 29, 2022, 2:25pm EST
Receiving a kidney disease diagnosis can be overwhelming and lead to mental health struggles like depression or anxiety. Talking with someone who has gone through similar experiences can help–just ask NKF Peer's mentee Manusca Benony and her mentor Doris Lew.
Manusca's kidney disease journey
Manusca struggled to control her high blood pressure for years before being diagnosed with kidney disease in 2003.
"When I was first diagnosed, my kidneys were functioning at 98%. I was young, and went on living my life without thinking about it," Manusca said. "In 2019, the disease progressed quickly and I was diagnosed with IgA Nephropathy."
The diagnosis scared and upset Manusca. She didn't have a family history of kidney disease, ate healthily, and exercised–why was this happening to her, and how would she explain it to her children?
"I was a new mom with two little children. It was scary and I wasn't sure how to explain my condition to them. My life was changing and I wanted to go through it as a family," Manusca said. "I also wanted to have the right language to answer their questions but it’s hard when you're that afraid."
As Manusca attempted to navigate the anxiety and confusion, a healthcare professional suggested that she apply for an NKF Peer mentor who could share their experiences with kidney disease. Manusca filled out a quick online form and matched with Doris.
See how NKF Peers may benefit you on your kidney journey.
Doris's kidney disease journey
Doris Lew is a kidney transplant recipient and Peers Mentor who just celebrated her sixth kidney-versary in May 2022. While her ending was happy, the journey there was long and hard.
"I was originally misdiagnosed with polycystic kidney disease in 2011 and then IgAN a few years later. I only told a few friends about it because I don't like to impose on people," Doris said. "At one point my husband said, 'You've lost two potential donors. You have to be more public about this.' So I started a blog to keep people updated."
After Doris opened up about kidney failure, loved ones banded together to support her.
"Once I opened up about my need for a kidney, a flood of support came in," said Doris. "Still, I wish I was connected to someone living with kidney disease or on peritoneal dialysis. There was a ton of information online, but I wanted to talk to a person and ask what worked well for them."
While Doris was on peritoneal dialysis, she suffered the heartbreak of losing four potential donors. Luckily, the fifth would be the charm: Doris received a kidney from a donor as a part of a ten-way paired kidney exchange program in May 2016. Three years later, Doris stumbled upon NKF Peers and was inspired to become a mentor to provide the support she wished she had.
Sign up to become an NKF Peer Mentor.
Bonding over similarities
Every mentee has the opportunity to try out different mentors, but Menusca loved working with Doris right off the bat.
"I didn't need to be paired with someone else. I wanted to communicate with my children and Doris shared how she dealt with it in her family. She helped me find the language to explain it in a way my family would understand," said Manusca. "Doris made it easy for me to ask questions and nothing was off limits. She shared her intimate experiences and helped me navigate the uncharted waters."
Doris also felt an instant connection with Manusca because their stories were similar–they were both mothers who had struggled to open up about kidney disease.
"I love mentoring Manusca because it feels like we are walking alongside each other. My kids are older and I have my transplant now, but I’m still going through the kidney disease journey," said Doris. "I was very private, I had all these questions but no one to ask. I ended up finding my own way but I'm so glad that I get to be here for Manusca."
Sign up to become an NKF Peer mentee.
Learning and growing, together
It's been three years since Manusca signed up for NKF Peers, but she continues to learn and gain inspiration from Doris's mentorship.
“This disease has forced me to change, to talk with people about my challenges, and advocate for myself. You can't suffer in silence when you need other people's help,” said Manusca. “I've adopted the mindset that kidney disease doesn’t have to stop everything. It's one more thing we integrate into life so it’s not intrusive."
For Doris, working with Manusca continues to be an empowering experience.
"There were many moments throughout my kidney journey where I felt let down by the health system. I had to learn how to advocate for myself and ask questions and go online," said Doris. "I love the ability to share what's worked for me and not let my experience go to waste."
You don't have to go through kidney disease alone. See how NKF Peers helped mentee Heather and mentor Christine on their kidney journeys.
There is no current cure for immunoglobulin A nephropathy (IgAN); however, a promising new drug granted accelerated approval may help treat it. Tarpeyo (budesonide) de...