'I am actually tired of being hungry': What we are hearing from kidney patients during the COVID-19 pandemic

As states and cities expand their emergency restrictions on businesses and individuals to slow the spread of COVID-19, Americans living with kidney failure are having to cope with disruptions to work, school, transportation and more, at the same time that they must continue receiving treatments and take measures to keep themselves safe from the coronavirus. 

We asked patients and their caregivers to tell us how they are being affected by the pandemic. Their responses give us a glimpse into the special challenges faced by those living with kidney failure, as well as their loved ones who care for them.

Patients feel isolated

Social distancing, sheltering in place and telework have changed patients' routines and eliminated many routines that connected them with others.

Pamela R., a home dialysis patient, misses going out. "No more lunch dates with my friends. I'm starting to feel isolated," she tells us. In the assisted living facility where Walt W., a dialysis patient, lives, residents can no longer sit together in the communal dining room. "I don't like the lack of socialization and being apart from everybody."

Isolation can take its toll emotionally. "COVID basically isolated me in my apartment," says Loretta O., a transplant recipient. "It can sometimes be difficult not to get too depressed or frustrated with my kidney issues and isolation." Monica L. agrees: "The COVID-19 virus has put limits on an already limited existence. The only place I go is to dialysis."

Patients feel anxious

The rapid spread of the coronavirus around the world and throughout the United States is indeed a serious health crisis. While it is important to stay informed — especially about recommendations from the CDC and local government requirements — the constant media attention to the crisis can feel overwhelming, and many patients are struggling with anxiety as a result.

"I am fearful every time I leave my home to go to the dialysis center, medical appointment or to a grocery store that I will or have been exposed to COVID-19," says Angela P. Transplant recipient Kelly D. tells us, "I am very scared of catching this COVID-19 virus. I live alone and feel anxious."

For dialysis and transplant patients, that is a legitimate concern because both are at higher risk for serious illness if they are exposed to the coronavirus that causes COVID-19.

Patients are practicing social distancing but some cannot avoid contact with others. Kathleen M. is a transplant recipient who lives in a high-rise building. "The elevator scares me and I do wear a mask," she says. "This has made me very scared of everything I do. I do not go out other than for a walk very early in the morning when I know there will not be any other people." 

Patients who receive dialysis in a clinic must travel to get there, which can add another layer of concern. "I worry about my transport drivers," says Nicole B. "The company gave them masks but they don't wear them. So I wear my mask from dialysis the day before for my ride to dialysis, and I keep the one from today's treatment on the way home."

Anxiety is not limited to patients; their caregivers struggle with serious concerns as well.

"I am constantly anxious and worried about my dad and him contracting COVID-19," says Sultana I., whose father is on home dialysis. "I am also worried that hospitals will not have the resources to help him if he is sick due to the overflow of the health care system."

Many family members and caregivers of dialysis patients still have to continue showing up for work every day. Christina R.'s business is considered essential and she has to be physically present at work. "The fear of bringing this virus home to my husband who is on dialysis is unreal."

To help patients minimize their potential exposure to the virus, caregivers are handling shopping and other errands. "My spouse fears going to the stores in case he should be exposed, and infect me in turn," says William W., a home dialysis patient. 

Patients and family members are losing their jobs

Emergency measures put in place by local and state governments have required some patients to make a difficult choice to sacrifice employment for their health. Jami B., a transplant recipient, is considered an essential worker and so is not covered by his state's stay at home order. "I am a rehab tech in a nursing home, considered essential workforce. I have chosen not to work due to my concern about possibly contracting coronavirus, and risking my new kidney, which I just received December 29."

The nation is experiencing a spike in unemployment as businesses close. Trina E., a dialysis patient, tells us, "I am unable to go to work due to the office being shut down for the coronavirus. I am the sole provider for my family and if I don't work, we don't eat." 

Dialysis patients often are only able to work part-time and many of those jobs are going away as more businesses close temporarily. Arthur W., a home dialysis patient, tells us, "I just became unemployed from my part-time job."

The worry about losing their jobs is very real for patients. Transplant recipient Jason E. considers himself blessed to be able to work remotely until the crisis is over. "However, I am now concerned I will be laid off and lose not only my health insurance benefits but my ability to pay for things not covered by insurance," he says.

Patients have trouble getting food and supplies

More patients now have to rely on others to help them shop for groceries and supplies, like transplant recipient Kimberly B.: "I don't go out at all so it is hard to get necessities without relying on others." Unfortunately, what they need is not always available.

"It has been a challenge trying to get renal-friendly foods and the nutritional supplements I use," says Aaron S., a dialysis patient, who has found empty shelves in the stores where he shops.

Patients who dialyze at home, like Arthur W., need critical supplies that are increasingly out of stock. "I have to buy supplies to do my home dialysis such as paper towels and sanitizer, and these items are hard to even find now," he says.

Patients are struggling financially

The COVID-19 pandemic is sending shockwaves through many patients' household finances.

Connie B., a dialysis patient, tells us, "I've had to use all my finances on supplies to fight this virus and I've run out."

Patients who live alone are depending more on deliveries. "I can no longer go to the store or work out. It's been difficult having to order groceries and everything online," says Bridget L., a dialysis patient who notes this adds "extra expenses I have a hard time affording."

"I have had to spend most of my budget on food and supplies so that I can self-isolate at home because I am very scared of catching this COVID-19 virus," says Kelly D., a transplant recipient. "I also am going through some transplant medication issues now."

Trina E.'s family is reeling financially after she lost her job: "We have missed a lot of meals. I am actually tired of being hungry."

The American Kidney Fund established a Coronavirus Emergency Fund to help patients like Trina E. and so many others who are unable to absorb the financial shocks of this nationwide health emergency. But requests for our help are far outpacing the funds we have available to help patients. Please consider making a donation to help us provide financial grants to the patients who need it most. 100% of all donations will go directly to patients.