Why lockdowns have left kidney patients ‘totally and completely terrified’

Nichole Jefferson has been social distancing for more than a decade. The 48-year-old Dallas resident had her first kidney transplant in 2008, and her anti-rejection medications weakened her immune system and left her susceptible to serious infection. So she was experienced with wearing disposable gloves to pump gas and use the ATM, wiping down her groceries, and donning a face mask well before COVID-19 emerged.

Two years ago, her kidney began to fail, and she went back on the transplant list. In April, Jefferson received her second transplant and hoped the surgery would give her more energy to engage with life. Instead, because of the coronavirus crisis, she’s more isolated than ever before.

“I was totally and completely terrified,” Jefferson says.

Jefferson is one of millions of Americans with chronic kidney disease who are finding it hard to cope during the pandemic. Not only are they at higher risk of serious complications from COVID-19, many are also managing the combined financial blows of the economic downturn and their need for high-priced, hard-to-get medications. And COVID-19 appears to be making this worse, as some patients with the virus are developing a rapid version of kidney failure.

Combined with the ongoing need for strict physical distancing to prevent infection, the situation has led to a silent physical and mental health crisis emerging alongside the pandemic, according to LaVarne Burton, President and CEO of the nonprofit American Kidney Fund.

Kidney disease is often hidden but quite pervasive. According to 2019 data from the U.S. Centers for Disease Control and Prevention, more than one in seven Americans—37 million adults—have some chronic form of the condition. This means these vital organs aren’t filtering toxins and waste out of the blood as well as they should, but they haven’t completely failed. Although simple blood tests can identify kidney deficiencies, explains Fahad Aziz, a nephrologist at the University of Wisconsin-Madison, these cases rarely develop symptoms.

Many of those ultimately diagnosed don’t know their kidneys are damaged until they show up in the emergency room with severe headaches and nausea, prolonged fatigue, and with so much excess fluid in their bodies that they struggle to breathe. As a result, they need the immediate help of a dialysis machine to perform the job of their non-functional kidneys to survive. In medical parlance, it’s known as “crashing into dialysis,” and it happens to half of those with kidney failure.

“For people who are in kidney failure, if they don’t get the care they need, they will die. It’s that dire,” Burton says.

Kidney failure nation

The fact that kidney failure patients are so sick already puts them at high risk for serious COVID-19 disease, but it’s not the only complicating factor, explains Ethan Marin, a nephrologist at Yale Medicine.

In the U.S., the leading causes of kidney failure are diabetes and high blood pressure, which afflict 34 million and 108 million American adults, respectively. Both conditions can damage the delicate blood vessels in the body’s pair of kidneys and can also worsen coronavirus outcomes. Over time, these fist-size organs lose their ability to maintain the proper balance of fluids and electrolytes in the body. Genetic and autoimmune diseases such as lupus also contribute to kidney failure.

Regardless of the cause, people whose kidneys no longer function have three major options for treatment: kidney transplant, dialysis, and medication to treat the symptoms of the organ’s failure. Transplant recipients must take strong immunosuppressant drugs to prevent their bodies from rejecting their new kidney, which leaves them vulnerable to all types of infections, including the SARS-CoV-2 coronavirus.

“It was hard to know how to advise people because our knowledge about the real risks of COVID was non-existent in the early days,” Marin says. “I have a patient that lives in New York City who told me he essentially did not leave his apartment for like six weeks.”

This isolation, paired with the severity of the condition and its never-ending therapies, means that less than a quarter of those with kidney failure are employed, according to a 2018 study. Because kidney failure disproportionately affects racial and ethnic minorities, and low-income individuals, unemployment can leave those affected in dire financial straits.

Such has been the case for Chika Nwerem, a 47-year-old from Portland, Oregon, who received a kidney transplant in August. The transplant meant the end of dialysis, but her doctors recommended taking three months off work due to her high-dose prescription of immunosuppressants. Nwerem’s family depends on her paycheck, and her leave is unpaid.

“America is a very tough place to be sick,” she says. To cover costs, Nwerem successfully applied for financial assistance from the American Kidney Fund, which launched an emergency relief program on March 20. It provides small, one-time $250 grants to individuals on dialysis to help pay for necessities. To date, this COVID-19 emergency fund has given out $3 million to more than 12,000 kidney patients, and when the group surveyed recipients, they found that people have overwhelmingly used the money to buy food, Burton says.

Nwerem is no exception. The high doses of corticosteroids that keep her body from rejecting her kidney have also made her diabetic, so she often can’t eat the same meals as her husband and stepson. Separately, Nwerem also depends on monthly assistance from the American Kidney Fund to pay the monthly Medicare premiums that covered her dialysis and transplant. This latter assistance will end in December for Nwerem, but the bills for her lifesaving immunosuppressant prescriptions and her specialty diet will continue. Nwerem feels she has no choice but to go back to work early.

“I wish to go back to work because it’s what makes me able to provide for my family,” she says.

COVID kidney punch

All of this would have been bad enough, but physicians treating some of the sickest COVID-19 patients earlier this year made a disturbing discovery. Even those who were healthy before their coronavirus infections began experiencing sudden-onset kidney failure.

Back in March, as New York City fought to contain its surge of coronavirus infections, nephrologist Girish Nadkarni was caring for hospitalized patients at Mount Sinai Hospital in East Harlem. Increasingly, he was being called in to consult about COVID-19 patients who had no kidney problems when they were admitted, but suffered rapid failure within days while SARS-CoV-2 simultaneously ravaged their lungs.

When Nadkarni searched through the emerging research on COVID-19, he found reports from physicians in China that also showed acute kidney injury in coronavirus patients. What they didn’t show was how common kidney problems were, and what this mysterious syndrome meant for patient outcomes.

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“We first thought that COVID-19 was just a respiratory disease, but it’s become clear that it’s really a systemic disease that can affect the kidneys,” Nadkarni says.

So Nadkarni began a study of his own, reviewing the electronic health records of 3,993 patients hospitalized at Mount Sinai for COVID-19 between February 27 and May 30. He found that 46 percent of the hospital’s COVID-19 patients experienced abrupt kidney failure and one in five required dialysis. Kidney function still hadn’t returned to normal in 30 percent of the patients who were discharged from the hospital. The results, published in September in the Journal of the American Society of Nephrology, made Nadkarni even more concerned for his kidney patients who weren’t in the hospital.

“We don’t know the true downstream implications of chronic COVID disease,” Nadkarni says, “and if it could bring an epidemic of chronic kidney disease.”

For current kidney disease patients, however, the challenges continue to mount.

The hydroxychloroquine blues

Friday, March 13, was Alysia Yamasaki’s last day of normality for several months. It was the last day she went into the office in Portland, Oregon, and her last time setting foot in a grocery store with the general public. (She now only uses the store's special hours set aside for people with immune conditions.) The 32-year-old has lived since childhood with a rare autoimmune disease that attacks her kidneys. After surviving two transplants in two decades, she wasn’t ready to bet her life when so little was initially known about the infectiousness of the new virus.

So, Yamasaki’s partner Joshua took a month-long unpaid leave from his job to protect her. The couple’s finances, already under pressure from Yamasaki’s ongoing medical care and expensive suite of medications, was further strained.

What made her the most fearful, however, were shortages of prescription drugs, namely hydroxychloroquine. Yamasaki has taken the drug every day for years to help manage her autoimmune condition. The medication was so essential that she ordered a three-month supply to ensure she would always have some on hand.

When President Donald Trump made (ultimately disproved) claims in March that hydroxychloroquine was a miracle cure for COVID-19, it led to a run on prescriptions. Yamasaki began to wonder whether she would be able to find the medicine upon which she—and her new kidney—depended. So far, she has maintained her supply, but worries about shortages continue to gnaw at her.

“The pharmacist sent out this message that there's a shortage and you might not be able to get hydroxychloroquine,” Yamasaki says. “You work so hard, you go through this mental process of waiting for a transplant, then getting it and wanting to keep it, and then to lose it because there's no medication.”

Surviving with all of this would be hard enough in normal times, but the pandemic has made everything more difficult, says Elizabeth Steinberg Christofferson, a psychologist for the transplant unit at Children’s Hospital Colorado. Every decision seems fraught with consequences, and to prevent infection, transplant candidates and recipients are having to isolate themselves from family and friends, which reduces the social support needed to navigate uncertainty, Christofferson says.

“There’s a lot of concern about COVID-19 in the general population, but adults with chronic health conditions have an extra stressor on their plate,” she says.

Separately, Aziz at the University of Wisconsin has found that the stress from COVID-19 in those with kidney transplants was also causing a rash of transplant rejections.

“People stopped taking their medication, either because they are just depressed, they don't want to take it, or they can't afford it,” he says. With treatment, all of Aziz’s patients were able to keep their kidneys, but he worries that others won’t be so lucky.

Christofferson says that maintaining social connections and regular medical care are key to coping with kidney disease during the pandemic. Mental health is as important as physical health, and she’s seen her patients find creative ways to safely gather outdoors or via video chat. Christofferson has also made it her mission to normalize mental health care for those with life-threatening chronic disease, and she encourages people to get extra support from a professional therapist.

Jefferson still considers her transplant to be the gift of life, and she intends to go out and live it. She is working to find the right balance of safety and vitality, especially in the most vulnerable first few months post-transplant. She recently drove over to Houston for a short getaway with her daughter for a change of scenery.

And Jefferson has always loved dining in restaurants. While takeout has helped sate this desire, she looks forward to the day when she can once again sit down and crack open a menu.

“With or without kidney disease, you only live once,” she says. “I'm going to keep living. I'm going to keep doing what I need to do.”