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What began as preparation for a simple surgery set off a chain of events in Janet Tennyson’s life that culminated in a kidney disease diagnosis. This journey would shed light on her health and expose systemic biases in medical testing itself. Her discoveries ignited a passion for advocacy and the desire to amplify the importance of early screening for kidney health.
Read on to learn about how Janet turned an impossible situation into an unwavering passion to help others.
An accidental finding
In 2021, Janet was getting an ultrasound in preparation for hernia surgery when the doctor noticed something odd.
“He said that the one kidney didn’t look quite right," Janet said. "One kidney was smaller than the other. But as a gastroenterologist, he was more focused on how to fix the hernia."
Janet's physician recommended consulting her primary care doctor, who, in turn, sent her to a nephrologist. The verdict: stage two kidney disease.
Janet's health puzzle started falling into place after this startling revelation.
"I found NKF’s website and learned how the kidneys worked and what happened when they failed. Once I learned more about kidney disease, everything started to make sense," said Janet. "I had high blood pressure, a leading cause of kidney disease. I also had anemia and foamy urine, both indicators of my declining kidney health."
Janet’s nephrologist prescribed medication to help keep her blood pressure, blood sugar, and red blood cells in check. Janet went a step further and learned about lifestyle changes that could help protect her kidney function for as long as possible.
Are you at risk of kidney disease? Take this one-minute quiz to find out.
An active participant in her care, Janet poured over her lab results. She uncovered something appalling–her eGFR, a measure of how well kidneys are working, was determined using race as a factor–something she knew should no longer be in use.
“The recently updated eGFR calculation doesn’t use race to determine kidney function. I was shocked to find out my doctor was still using the old equation that does,” said Janet. “I reached out to my local NKF office which confirmed that labs should no longer use the race-coefficient. They recommended I find a new nephrologist or have my eGFR recalculated.”
Janet’s request for new testing was more challenging than anticipated.
“I showed my nephrologist the bias and asked him to order new testing without the race-coefficient. Since I was at stage two kidney disease, he was hesitant to order new testing,” Janet said. “He wanted a conservative approach to my treatment. I wanted to have my correct staging. It could make all the difference in my diet and treatment.”
With persistence, the nephrologist relented and ordered new labs. Janet went through the 24-urine test and blood work needed for a correct diagnosis.
“The new test determined I had stage three kidney disease,” Janet said. “I’m a bit older and knowledgeable, so I wasn’t afraid to advocate for myself. But what about those who don’t have the resources? Had I not been someone who had access to the internet or didn’t know about NKF I could have gotten sicker quicker. This situation ignited my passion to advocate.”
With the correct staging, Janet is better able to manage her disease. Should her kidneys fail, she’ll know about it sooner and have quicker access to the transplant list.
Becoming an advocate
With newfound passion, Janet joined NKF’s advocacy community, Voices for Kidney Health.
"I've spoken with my local lawmakers about the Living Donor Protection Act and hope to speak with them again about kidney equity during the 2024 Patient Summit in D.C.," Janet said. “I want to advocate for those who are older, on dialysis, or lack family support.”
Janet's enthusiasm goes beyond the eGFR equation change. She's also promoting preventative screening.
“We need to amplify the importance of screening for kidney disease. You have recommendations for mammograms, colonoscopies, and yearly check-ups–why not kidney disease?” Janet said. “We know the top risk factors and that kidney function declines as we age. The earlier we can catch kidney disease, the better.”
Alongside her new sense of purpose, Janet has found a community where she belongs.
“I don’t feel alone. I feel a sense of duty to fight for those advocates behind me who are sick,” said Janet. “Kidney disease is progressive and there is a chance I’ll need someone to fight for me in the future. I hope to continue making a difference by sharing my story and inspiring others to share theirs.”
Help make change and find your community. Become a Voices for Kidney Health advocate.
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