Boston-area native Jen Como first learned she had kidney disease at age 12 when bloodwork conducted as part of a routine physical for summer camp indicated that she had just 15% kidney function. She was in dire need of a kidney transplant.
She was lucky in that her father was a match. He donated a kidney when Como was 13 years old, but the immunosuppressant drugs meant to keep her body from rejecting the new organ took a steep toll on her body. She experienced muscle loss and osteopenia, and developed cataracts and painful warts on the bottoms of her feet that limited her ability to walk and stand.
By age 19, the transplanted kidney began failing. Como soon after entered a trial at nearby Massachusetts General Hospital, where researchers were investigating whether patients who received transplanted bone marrow along with the kidney could eliminate the need for harsh anti-rejection drugs.
In 2002, Como became the first patient in the world to receive a bone marrow–kidney transplant; this time from her mother.
For the next two decades, Como stayed healthy and active. She won several swimming gold medals at the World Transplant Games and, after earning a master’s degree in science in 2004, began a career in population health.
In late 2019, however, Como’s body started rejecting her second transplanted kidney. Hoping to delay the need for yet another kidney transplant, Como began taking immunosuppressant medications at the beginning of 2020.
Then the COVID-19 pandemic hit and life as Como, now 42, knew it ground to a halt.
The arrival of the SARS-CoV-2 virus meant “total isolation,” she says. “I stopped any type of social interaction. I didn’t go anywhere. I didn’t see friends.”
Even meeting up outside posed a risk.
“It was really hard, because a lot of my friends have young children and it wasn’t really safe for me to be around them,” she says.
The immunosuppressant medications she must take to preserve her transplanted kidney for as long as possible mean that becoming infected with COVID-19 would likely be a far worse experience for her than for someone who’s not immunocompromised.
“If COVID had happened five years ago, I would have been a normal person because I wasn’t immunocompromised then,” she says. “But now I am.”
Kidney Disease and COVID-19 Risk
Como’s caution has been warranted, because the combination of COVID-19 with chronic kidney disease and other long-term kidney diseases such as polycystic kidney disease and glomerulonephritis can be particularly dangerous. In the case of transplant recipients like Como, the statistics are dire, with death occurring in “one in five people who had a kidney transplant who got infected with COVID,” says Silas Prescod Norman, MD, MPH, chair-elect of the American Kidney Fund and a transplant nephrologist at University of Michigan Health in Ann Arbor.
The outlook is also challenging for those who haven’t had a transplant; chronic kidney disease is a key risk factor for severe COVID-19.
“There’s no question that compared to the typical 18- to 29-year-old without chronic kidney problems in the community who gets COVID, our patients are substantially more likely to get hospitalized and substantially more likely to die from COVID infection,” Norman says.
There are several reasons why.
First, “patients with chronic kidney disease can very quickly have multiple risk factors that increase their likelihood of infection and having more severe disease,” Norman says. These other risk factors include diabetes, high blood pressure, reduced physical activity, and obesity.
Amul Jobalia, MD, chief of nephrology at Santa Clara Valley Medical Center in San Jose, California, adds that immune system dysfunction is also a factor. Because they’re ill — and in the case of transplant recipients, probably on immunosuppressant medications — their immune systems are already dealing with a lot of stress.
People who are living with renal failure have less functionality from their white blood cells — the cells that help combat infection.
“They have a harder time responding to and fighting off infections,” says Janis M. Orlowski, MD MACP, chief health care officer for the Association of American Medical Colleges in Washington, D.C., and a practicing nephrologist.
What’s more, people with end-stage kidney disease who undergo in-center hemodialysis are at particularly high risk of contracting COVID-19 because “these patients [typically have] larger community exposure coming to dialysis multiple times a week,” Jobalia says.
Consequences of COVID-19
For people with kidney disease or renal failure, the consequences of a COVID-19 infection can be dire. Uday Nori, MBBS, a transplant nephrologist at The Ohio State University Wexner Medical Center in Columbus, explains that when the virus begins circulating in the blood, it affects all the organs in the body. “When you have chronic kidney disease in the background, most of these organs are functioning at less than their total capacity.” This means the kidneys can become overloaded pretty quickly, and that results in negative outcomes.
“We don’t know exactly why COVID seems to target the kidneys,” Orlowski says. “But there are two thoughts.” The first is that when you’re very ill in the hospital with any sort of condition, “anywhere from 15% to 50% of people will end up having acute kidney injury.” It’s just a risk associated with any sort of severe illness that results in hospitalization.
The second thought, Orlowksi says, is “we believe that in some people, the kidney was actually a target organ of the virus.”
“From biopsy studies, you can find the COVID virus in the kidney itself,” Norman explains. The virus appears to trigger an inflammatory response in the kidney, which leads to acute damage. In some cases, function may be recoverable, but in others, it could lead to chronic kidney disease.
The structure and function of the kidney may play a role in that targeting, Nori says. While the kidneys make up less than 1% of the average person’s body weight, they receive 20% of all the blood volume every minute. This means they’re highly vascularized organs, and as researchers are learning, COVID-19 can be particularly harmful to blood vessels. Damage to the blood vessels from inflammation along with an increased risk of blood clots can lead to stroke and heart attacks.
For patients with kidney disease and diabetes, this can compound the issue since the high blood glucose levels that are the hallmark of diabetes also cause damage to blood vessels.
The consequences of COVID-19 infection on the kidneys over the long term isn’t fully understood, but Orlowski thinks we might see a spike in new chronic kidney disease diagnoses as time goes on.
“I’m seeing people who’ve recovered, but not fully recovered,” from COVID-19 she says. “They have permanent damage to their kidneys and they will need lifelong follow-up.”
She adds that if you were very ill with COVID-19 and have recovered, it’s worth asking your doctor to test your kidney function to make sure the kidneys haven’t been further damaged. If your kidney function has dropped, even to a critical level like 20%, “you won’t feel it. You won’t know it” unless your doctor tests you for it.
There’s also some concern that the SARS-CoV-2 virus may remain in the body and become reactivated at a later time, similar to how the chicken pox virus can reemerge later in life as shingles, Orlowski says.
Drastic Measures to Avoid COVID-19
These stark statistics and potential consequences have meant radical lifestyle changes for many patients with compromised kidneys, though there has been a wide range of experiences among patients with different kinds of kidney disease during the pandemic.
Martha Williams, 43, of Cottleville, Missouri, has polycystic kidney disease, a disorder that causes clusters of cysts to develop within the kidneys. Over time, these cysts cause the kidneys to enlarge and lose function.
Though she’s not considered to be immunocompromised because she hasn’t had a transplant yet, Williams’ doctor has suggested she’ll probably need a transplant before she reaches age 60. Getting COVID-19 might add further injury to her declining kidney function, which is currently at about 40% of where it should be.
When the pandemic hit, Williams took steps to protect herself, including masking and practicing social distancing and getting vaccinated as soon as she could. “It’s a bit of the Wild West here in Missouri,” she says of how some people haven’t been taking COVID-19 restrictions seriously. Though masking restrictions had been lifted at the school where she works as a substitute teacher, Williams “decided to wait a couple more weeks to err on the side of caution” before returning to the classroom maskless in mid-March 2022.
The good news for Williams is that she’s very healthy apart from the kidney disease and her doctor advised her not to panic about her COVID-19 risk. “He said, ‘you could be in a lot worse condition and it would be a bigger deal.’ Once I heard him say that it wasn’t a super huge risk, I could take a little bit of a deeper breath and relax. I’m obviously still concerned, but not as concerned as I could have been.”
For Como, however, the pressure to be extremely careful remains.
Her husband also had to change how he interacted with people at work. He started wearing an N95 mask as soon as the pandemic was declared and got vaccinated as soon as possible. But his world shrank too, as he hoped to prevent exposing his wife to COVID-19.
“At the beginning, we did all the Zoom game nights or whatever,” she says. “But as time goes on and your friends are vaccinated and safe, nobody wants to really do that anymore. There are definitely people I totally lost touch with just because of the circumstances.”
Antibodies Promise a Return to Normalcy
It’s been a long pandemic for many people with chronic kidney disease, those on dialysis and individuals who’ve had kidney transplants. But vaccines — and the antibodies they stimulate the body to create — can help.
“Vaccines definitely play a role in limiting disease severity in this population,” Jobalia says. While “COVID-19 vaccines in end-stage kidney disease patients may not be as effective, they can lessen the severity of disease and offer some protection to this vulnerable population.”
For patients who are on the transplant waiting list, vaccination becomes even more important because getting vaccinated after a transplant may not work. About 45% of patients who have had a transplant don’t make antibodies even when they’ve had multiple shots, because the anti-rejection medications limit the body’s ability to make antibodies. This is why Norman says he and his team have been working so hard to get all the patients on their transplant list vaccinated against COVID-19 as soon as possible.
Como is among that 45% of patients who can’t make antibodies — four vaccines against COVID-19 did not result in any antibody development. The medication she’s taking has been found to especially limit the development of antibodies against COVID-19.
“It was almost like I was a new transplant patient,” Como says. “It was like I had everything stacked against me.”
In early March, however, she managed to gain access to a monoclonal antibody treatment called Evusheld. Getting the call that she could finally get this protective therapy totally changed her outlook.
“I got a message from the patient portal that I qualified and I literally screamed and danced around the house,” she says. “I called my husband and my mother and I was so excited. It came at the most perfect time because I just felt like I had gotten to that point where I had to start doing something. I couldn’t live like that anymore.”
One problem with the Evusheld injection is that it offers protection for only about six months. It’s also very expensive and in short supply, Orlowski says.
Nevertheless, Como says she feels lucky that she was able to get access to this medication that provides the antibodies against COVID-19 the vaccine couldn’t. It’s helped her feel safer, but she still plans to wear a mask for the foreseeable future and she tests herself for COVID-19 on a near-daily basis.
Still, Como has begun stepping back into her previous life.
“I met my best friend in Providence [Rhode Island] last Saturday morning and we had breakfast. You’d have thought I’d just won a million dollars. It was just so wonderful,” she says. She’s also looking forward to taking her first vacation in over two years to go hiking with her husband in Arizona next month. “In this little window, if I know I have antibodies, I’m getting out of here.”
This is the power of antibody protection. The kind of protection that anyone who’s eligible to take the vaccine can offer not only to themselves, but also to the people they love who may be like Como and unable to make their own antibodies.
If you have kidney disease, Orlowski says it’s worth talking to loved ones about accepting the COVID-19 vaccine if they’re hesitant.
“In order to protect yourself,” she says, “you really need to live with people who are vaccinated, who are protecting themselves as well. Get vaccinated so you can protect your loved ones.”