Former nurse and patient advocate is looking for a kidney. Now the mother of 4 has to advocate for herself

CHICAGO — Registered nurse Christine Hernandez was just entering her 40s when she asked her doctors about her kidney function.

a person sitting on a table: Christine Hernandez preps herself for dialysis at her home Sept. 18, 2020, in Chicago, Ill. Hernandez, a registered nurse, is suffering from stage 5 kidney failure. She has set up her sunroom as a "hemo center," where she performs all of the duties necessary for her dialysis.

© Stacey Wescott/Chicago Tribune/TNS
Christine Hernandez preps herself for dialysis at her home Sept. 18, 2020, in Chicago, Ill. Hernandez, a registered nurse, is suffering from stage 5 kidney failure. She has set up her sunroom as a “hemo center,” where she performs all of the duties necessary for her dialysis.

Knowing she had two brothers with kidney disease, she asked her primary care physician for a referral to a nephrologist.

Hernandez recalls her doctor saying that her kidney lab results were good, and there was no reason she should see a nephrologist. But Hernandez, a Chicago mother of four, said she had a feeling she had kidney disease too.

The referral was given, and the nephrologist biopsied her kidneys in 2016. Her kidneys were operating at only 30% of capacity, and that was without having symptoms, she said.

“I was just flabbergasted,” she said. “I cried. All these things went through my head really fast: I was like, ‘I have little kids. What’s going to happen to them? I’m a nurse; I’m supposed to help people. What’s going to happen to my career?’ I was in fight or flight mode — trying to figure out how could I fix it because in the medical field you could fix everything, right?

“Well, you can fix everything but a kidney. I asked my nephrologist if we can put a stent inside my kidney to open up, so it could get blood flow through it, and he says it’s too late for that.”

Hernandez was diagnosed with medullary cystic kidney disease, an inherited condition that ends in kidney failure. In Hernandez’s case, the condition resulted in her arteries atrophying. Her doctor recommended going on a strict diet and seeing a nephrologist often. But eventually she would need dialysis and a transplant. In a matter of four years, Hernandez says her condition has progressed pretty fast. She went from 10-hour days advocating for patients in hospitals to spending almost eight hours a day four days a week preparing, using and breaking down her home hemodialysis device, which purifies her blood. She’s on three different regional transplant lists around the country and hopes to add more. She’s also seeking a donor on her own via Facebook. Her family’s history of kidney disease prevents a relative from donating, she said.

“I’m just fighting for my life,” Hernandez said. “I’m trying to get my life back and live for my kids and go back to nursing, believe it or not. A lot of nurses are like, ‘Oh, with your condition, nurses would retire.’ But I’m not your average nurse. I want to go back and pay it forward; I want to help people.”

Hernandez, who worked with high-risk moms and babies at Northwestern Memorial Hospital and in the neonatal intensive care unit at Mount Sinai Hospital, will tell her story to a virtual audience Oct. 29 as part of the National Kidney Foundation of Illinois (NKFI) 35th annual gala. The event will raise funding for and awareness of NKFI’s work with those at risk or affected by kidney disease through free screening programs and community health initiatives.

According to CEO Jacqueline Burgess-Bishop, people in the Black community are three to four times more likely and those in the Latinx community are two to three times more likely to have kidney disease than the white population, due to health disparities and systemic inequalities.

“Kidney disease is what we call a silent disease. There are genetic components, but it largely results from uncontrolled diabetes and uncontrolled hypertension,” Burgess-Bishop said. “The challenge is one in three people are at risk for kidney disease and don’t even know it. And because the symptoms do not present until further progression to the stages of kidney disease, people are just not aware they have it. There are individuals that literally crash into dialysis — they end up at a hospital in an acute unit, and unfortunately that’s when a diagnosis is reached. Our mission is to change that trajectory.”

Before COVID-19 struck, NKFI was conducting kidney disease screenings throughout the state. Since June, the organization has been partnering with community-based organizations to provide personal protective equipment and information on kidney disease to those who have had challenges getting to the store. The organization has helped over 3,500 households, Burgess-Bishop said. The organization has conducted webinars and has switched to a virtual education system since the pandemic began.

Burgess-Bishop hopes stories like Hernandez’s help more people become proactive in their kidney care.

“Just ask your physician,” she said about a kidney disease test. “If you have 15 to 20 minutes with your provider, even if it’s an annual checkup, it’s something that can be included. Make a request.”

She said there are two tests that look for indicators of kidney disease, a urine and a blood test. The former looks to see if you have blood in your urine by way of the albumin-to-creatinine ratio. The latter looks at creatinine in your blood. If kidneys are damaged, they have trouble removing creatinine from your blood. The NFKI site has more information, including other risk factors and proactive approaches.

Hernandez is doing her part by sharing her story. She said that when she gets her transplant, she plans to go back to work again — this time to work with patients with kidney problems. Her advice to others: Have a talk with your doctor if you have high blood pressure, diabetes or a strong family history of kidney disease.

Hernandez said that when COVID-19 shut down the world, it shut down her prospects for a kidney donor. But the search continues for the perfect match. Her kidneys are now operating at 11% or less.

“If you’re not going to be your advocate, guess what? The doctor is not going to ask for you. You have to push the doctor, you have to ask these questions, because sometimes the conversations don’t come up, and they’re missed,” she said. “That’s what I always tell my patients: ‘Be your own voice, be your best advocate’ because you have to love yourself, and you have to talk to the doctor and you have to ask these questions that might not be so comfortable. But guess what, they might save your life.”


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