Waiting for a kidney during a pandemic - North Carolina Health News
By Melba Newsome
This story is co-published by NC Health News, the Charlotte Post and the Charlotte Observer.
This story was supported by the Pulitzer Center.
Traci Evans Simmons’ job as an assistant in a pediatric medical practice normally brings her into contact with many people every day, a fact that unnerved her when the coronavirus began to spread. When the lockdown began in mid-March, she requested and received permission to work from home. For the next two-and-a-half months, she recalls leaving her home in Mint Hill, just east of Charlotte, only three times.
She consumed news and any information she could find about the coronavirus and became obsessive about wearing masks, using hand sanitizer, disinfecting everything and using copious amounts of ammonia to clean every inch of her house.
Simmons, 50, also relentlessly badgered her husband, Bruce, and 22-year-old daughter, Brielle, both of whom continued to travel back and forth to their jobs at medical facilities every day.
“I was afraid they were bringing something in the house. I told them ‘you don’t even talk to me ‘till you wash your hands!’” she said. “I was like ‘You don’t understand! If I get sick, I’m gonna die!’ but the more I stayed in the house, the better I felt because I felt protected in the house and I knew my family was being careful at work.”
The Simmons family, like countless others, became mired in uncertainty. They were unsure about how to safely live their lives, whose guidance to trust and how to make decisions about things that, months earlier, would not have warranted a second thought. As the lockdown eases and the virus resurges throughout North Carolina and the Sun Belt, the entire family grapples with how to navigate which risks are acceptable and which are reckless.
Simmons acts as if her life depends on the choices she makes because she believes it does, and with good reason. She suffers from chronic kidney disease and has been on the waitlist for a new one for more than two years.
Her condition makes her more susceptible to not only contracting the coronavirus but being made deathly ill by it.
The pandemic and Black health
In the months since the United States became the epicenter of the novel coronavirus pandemic, news from the medical and scientific community has been rapid and ever-changing.
With all of that new knowledge, the mountain of evidence of the coronavirus’s devastating impact on the health and well-being of African Americans is constant and growing. A recent review indicated that Blacks suffer three times as much morbidity due to COVID-19.
Researchers and medical professionals acknowledge that what we initially understood as primarily a respiratory illness also causes significant injury to the kidneys. The estimated 37 million American adults with chronic kidney disease are also at greater risk of contracting the virus because of compromise to the immune system, and if they do get it, are at greater risk of becoming sicker.
Add this to the ever-growing list of risk factors for African-Americans, who are three times more likely to have chronic kidney disease and nearly one-and-a-half times more likely to suffer kidney failure. Those with kidney disease have compromised immune systems that reduce the ability to counter infection and are, therefore, more susceptible to the effects of the virus.
COVID and kidney disease
The COVID-19 pandemic has had major impacts on kidney care, including the way routine dialysis is provided and a significant drop off in the number of kidney transplants.
Recent data released from the Centers for Medicare and Medicaid Services showed that kidney disease patients undergoing dialysis had the highest rates of COVID-19 hospitalizations. Research finds that patients with kidney diseases were two-and-a-half times more likely to die than other hospitalized patients with COVID-19. There is also growing concern over potential shortages of dialysis equipment.
National Kidney Foundation CEO Kevin Longino said a significant number of patients going into the hospital to be treated for COVID-19 are coming out as kidney patients. About 15 percent of all hospitalized coronavirus patients with no previous history of kidney disease now face acute kidney injury (AKI), which increases the risk of kidney disease. A report in the New England Journal of Medicine found that the coronavirus may have even triggered new-onset diabetes in some patients.
“We believe this may be a looming health care crisis that will put a greater strain on hospitals, dialysis clinics and patients, for whom chronic kidney disease will be a lasting remnant of the coronavirus crisis––even after a vaccine is hopefully found,” said Longino.
Living with fear
When the news first started coming about who was at greatest risk of severe infection and death, the focus was on the elderly and those with underlying health conditions such as diabetes, respiratory illnesses, obesity and heart disease. Only recently did the Centers for Disease Control and Prevention add chronic kidney disease to the list.
Nonetheless, Simmons was always panicked about contracting the virus.
“There is always a level of anxiety when you have a chronic illness. When they said it was worse for people with pre-existing conditions, I really just lost it. I was scared and crying all the time,” she said.
Simmons’ kidney problems started more than 20 years ago. She didn’t know it at the time, but foam in her urine, persistent exhaustion and her swollen ankles were key indicators. A blinding headache finally drove her to the ER, where tests showed excessive protein in her urine. This led to a diagnosis of glomerulonephritis, a disease marked by the inflammation of glomeruli, the tiny vessels in the kidney that filter excess fluid, electrolytes and toxins from the bloodstream.
The disease runs in families and can be acute or chronic. Simmons has an uncle and two cousins with the condition, one of whom had a transplant a few years ago. In retrospect, she now believes that, although he was never diagnosed despite years of dialysis, her grandfather was likely afflicted with glomerulonephritis.
When Simmons and her family moved to the Charlotte area in 2007, her new nephrologist openly doubted she could avoid dialysis for another year. But hypertension medication and regular monitoring delayed that eventuality for another decade. She opted for peritoneal dialysis at home over going to a clinic for hemodialysis, when the day finally arrived. That decision now seems prescient in light of the infection risks associated with hemodialysis.
Five nights a week, she spends about 30 minutes setting up the cycler for the nearly nine-hour treatment. While she sleeps, a surgically inserted catheter circulates a sterile cleansing fluid through the abdomen to filter out toxins. “It’s a lot and you have to be super vigilant,” she says.
Simmons was turned down for the transplant waitlist twice — first, for not yet being sick enough and then for being overweight. Two years ago, after undergoing an extensive pre-transplant screening and examination, Wake Forest Baptist Health agreed to add her to their kidney transplant waitlist.
How the coronavirus upended the transplant system
The transplant process, which provides organs to more than 30,000 patients each year, is long and sometimes mystifying. When a donor becomes available, the organ procurement operation (OPO) enters the patient’s medical information into a nationwide computer database. The system generates a list of potential recipients using factors such as location, progression of illness, and time on the waitlist. The OPO team then offers the organ to the top-matched patients. When someone accepts, the surgery usually takes place within hours.
As the virus spread across the county, hospitals prepared for an expected influx of COVID-19 patients in a way that upended the carefully devised transplant routine. They converted operating rooms into intensive care units or coronavirus wards and reserved scarce PPE for COVID-19 patients. To avoid spreading the virus, hospitals canceled or delayed elective surgeries, which drove down the total number of transplants by more than a quarter.
An article published in the American Journal of Transplantation added new concerns to the mix. Researchers contended that because of a more intense and prolonged shedding of virus, COVID-19 could not only induce severe consequences in organ recipients but also place health care teams and family members at risk.
“In the early days of COVID-19, we didn’t know a whole lot about its effect on really anybody,” said Vincent Casingal, a surgeon at Atrium Health’s transplant facility. “What we did know is that patients who were infected whether we knew it or not, if they underwent surgery, they did very poorly afterward.
“We determined as a transplant community that living donor transplants would be put on hold for a variety of safety reasons.”
This prohibition lasted until early May when Atrium put protective measures in place and resumed transplants. In the meantime, some transplant programs declined to accept particular organs for a variety of coronavirus-related reasons, including donors or transplant candidates who had either tested positive for the virus or been exposed to it.
A significant number of potential recipients declined organs because they feared contracting the virus, leading the United Network for Organ Sharing (UNOS) to create an “inactive due to COVID-19” code for patients who had COVID-19, were exposed to it, or feared catching it in the hospital.
Transplants from deceased donors couldn’t be halted because the organs are only viable for a limited amount of time but those operations also declined significantly because fewer organs were available.
“We think that’s because there were fewer people going out and participating in high-risk behaviors and things like that,” said Casingal.
Even in the best times, the number of candidates on the waitlist outnumber the available organs. The average wait time for a kidney transplant can be three to five years at most centers and even longer in some parts of the country. According to UNOS, approximately 17 people on the waitlist died every day in 2018.
As of July 1st, Simmons was among the 101,004 people across the country and 3,059 in North Carolina who have been waiting more than a year for a kidney.
Simmons was scheduled to undergo the annual pre-transplant screening and evaluation to make sure she was still eligible in early April but that, like so many medical procedures deemed non-essential, was postponed indefinitely. In many ways, the postponement was a relief because she dreaded going into a place filled with sick people. Her appointment was recently rescheduled for mid-July. Even though each day waiting for a kidney means another day of deteriorating health, she’s still afraid to go.
How long she waits depends in large part on her blood group and the number of available donors in the area or region. Simmons is blood type O, which means although she is a universal donor, she is not a universal recipient, which makes her wait for a kidney longer.
“My husband wanted to give one of his kidneys but he has a little bit of high blood pressure,” she said. “I told him I didn’t want him to risk that because I want our daughter to always have a parent. My mom thought she was gonna give me her kidney but she’s almost 86!”
She recently learned that she could cut her wait time if she agrees to take a kidney from a donor with hepatitis C.
“Some days when I don’t want to do this [dialysis], yeah, I’ll take it. And then other days I’m afraid of the chances of getting hepatitis C,” she said. “They say there is medicine to prevent that but this would be one more medication I’d have to take. My husband is supportive of whatever decision I make.”
On June 1, Simmons returned to work in the office, which made a number of accommodations for her. Her coworkers are careful to follow safety guidelines to avoid infection and her desk has been moved to the back of the office where she comes in contact with fewer people. She didn’t realize how much she missed the human interactions and now finds her work environment comforting.
“It’s been really good to be around people again,” she said.
Support for this story was provided by the Pulitzer Center for Crisis Reporting.