COVID-19 and PKD: What you should know

Coronavirus Disease 2019 (COVID-19) is a type (strain) of coronavirus. A virus is a very small (microscopic) type of germ that can cause an infection. It can only replicate in a host, such as a person or other living things. You might not always feel sick from viruses. However, viruses can make you seriously ill and cause disease.

The most common symptoms of coronavirus disease (COVID-19) are:

• Fever
• Cough
• Shortness of Breath

The virus spreads mainly from person-to-person (within about 6 feet) through small drops of liquid made when an infected person coughs or sneezes (known as respiratory droplets). Having chronic kidney disease of any stage increases risk for severe illness from COVID-19. Therefore, it is especially important for people with PKD to take actions to reduce your risk of exposure.

Patients with late-stage kidney disease or who are post-transplant should consult with their doctors to see if any additional preventative measures are necessary.

Recently, research was published by a team including PKDF’s Scientific Advisory Panel Chair, Michal Mrug MD, and PKDF’s 2019 grantee Xiangqin Cui PhD, that concluded that ADPKD doesn’t appear to be a risk factor for worse COVID-19 outcomes as compared to patients with other forms of CKD, cystic or liver diseases. This study was conducted among veterans in the VA health record system and larger studies may be needed to truly understand the impact of COVID-19 on PKD patients. However, in the meantime, a Canadian research group run by Dr. Matthew Lankentree found similar results. 

Find more information on what COVID-19 is at the Centers for Disease Control (CDC) website.

Vaccines are one of the most effective tools to protect your health and prevent disease. Vaccines work with your body’s natural defenses so your body will be ready to fight the virus if you are exposed (also called immunity).

While the effectiveness rates of COVID-19 vaccines are very good, we now know that people who are on immunosuppression medications for the treatment of advanced kidney disease and kidney transplant recipients, may not receive the same level of protection, also known as antibody immunity, from the COVID-19 vaccine as people who are not on immunosuppressive medications. The CDC recommends that these individuals receive an additional dose of mRNA COVID-19 vaccine (Pfizer or Moderna) at least 28 days after their second dose.

While more research is needed to learn more about the effectiveness in people with advanced CKD, those on dialysis, and transplant recipients — these vaccines have been demonstrated to be safe in this population.

Data from clinical studies demonstrates that getting a COVID-19 vaccine may help keep you from getting seriously ill if you do get COVID-19. These vaccines cannot give you COVID-19.

Staying safe after vaccines

Although getting vaccinated is the best way to protect yourself and those around you from COVID-19, the omicron variant causes more infections and spreads faster than earlier forms of the virus that cause COVID-19. Important things to know:

• Unvaccinated people may experience more severe illness than previous strains of COVID-19
• In those who are fully vaccinated and have a rare breakthrough case of COVID-19, you are at significantly less risk of hospitalization and death, and appear to be infectious for a shorter period

Regardless of vaccination status, due to the omicron variant, the CDC recommends once again wearing masks indoors in public spaces to reduce the spread of this disease.

Read more about the CDC’s recommendations for choosing safer activities after vaccinations here.

What’s the latest on treatments?

In October 2020, the FDA approved Veklury (remdesivir) for use in adult and pediatric patients (12 years of age or older and weighing at least 88 pounds) to treat cases of COVID-19 requiring hospitalization. Three anti-SARS-CoV-2 mAb products (monoclonal antibodies) have received Emergency Use Authorizations for the treatment of mild to moderate cases in non-hospitalized patients who are at a high risk of severe disease (such as patients on immunosuppressive medications). These are administered as an IV infusion and are called:

• Bamlanivimab plus etesevimab
• Casirivimab plus imdevimab
• Sotrovimab

Treatment using monoclonal antibodies should be started as soon as possible after a positive COVID-19 test and within 10 days of onset of symptoms.

On December 22, 2021, The FDA also issued an Emergency Use Authorization for Paxlovid (an oral antiviral similar to remdesivir) for the treatment of mild to moderate cases in non-hospitalized patients who are at a high risk of severe disease (such as patients on immunosuppressive medications). Paxlovid should also be started as soon as possible after a positive COVID-19 test and within 5 days of onset of symptoms.

On Dec. 24, 2021, a pre-exposure prophylaxis called EVUSHELD received Emergency Use Authorization from the FDA to be made available during the COVID-19 pandemic to patients that are moderately to severely immune compromised, such as transplant patients taking immunosuppressive medications, that may not mount an adequate immune response to COVID-19 vaccination. EVUSHELD is a combination of tixagevimab and cilgavimab, and can be used in adults and adolescents (12 years of age and older and weigh at least 88 pounds) for prevention of COVID-19 in patients that are not infected with SARS-CoV-2 and have not had recent contact with someone that is infected.

If you are a post-transplant patient or are otherwise at risk for more severe illness, talk to your doctor about these treatment options.

To stay up to date on the latest treatments, check out the guidance provided by the NIH or UpToDate here.

The best way to protect yourself is to talk to your doctor about getting the COVID-19 vaccine.

Where can I get tested?

There are two kinds of tests are available:

• Viral tests tell you if you have a current infection
• Antibody tests tell you if you previously had COVID-19. We do not yet know if having antibodies for the virus can protect you from getting infected again or how long the protection would last.

It is important to remember that a negative test result means that the virus that causes COVID-19 was not found in a person’s sample. In the early stages of infection, it is possible the virus will not be detected especially in those who do not have any symptoms.

The CDC has guidance for who should be tested:

• People who have symptoms of COVID-19
• People who have had close contact (within 6 feet for a total of 15 minutes or more) with someone with confirmed COVID-19
• People who have been asked or referred to get testing by their healthcare provider, local or state health department
• Unvaccinated people who have taken part in activities that put them at higher risk for COVID-19, such as travel, attending large social gatherings, or being in crowded or poorly-ventilated indoor settings

Not everyone needs to be tested. If you do get tested, you should self-quarantine/isolate at home pending test results.

Ask your doctor or click here to find a testing location near you.

Call ahead

If you are experiencing symptoms and feel you need to be seen by your doctor, call your healthcare provider before your appointment. Tell your health provider that you are concerned that you may have COVID-19. This allows your provider to take steps necessary to keep others from being exposed.

Health insurance

Visit healthcare.gov’s new coronavirus webpage to find information on purchasing exchange plans, continuing employer-sponsored coverage through COBRA, or getting help with premiums for those who have lost their employer-sponsored coverage or have had a significant change in their income.

Medical care and social distancing

Due to hospital capacity issues, restrictions on the services offered during peak COVID-19 cases in your area, or personal preference, you may consider using telehealth to access your clinician or other medical providers. This allows you to communicate using a phone or device with the internet to talk to your doctor live, send and receive messages, and get many aspects of standard medical care remotely. Check with your doctor to find out your options.

Guidance on returning to work

The CDC recommends that vulnerable individuals and those taking immunosuppressive medications are considered a high risk group for more serious COVID-19 illness and so should continue to limit interactions with other people as much as possible. There are laws to protect people with chronic conditions and illnesses from discrimination in the workplace. As an individual with PKD (or a caregiver), you may qualify for one of the following acts designed to provide paid leave:

• Americans with Disabilities Act
• Family and Medical Leave Act
• Families First Coronavirus Response Act

NKF has also drafted a letter to your employer requesting work accommodations because you are at high risk for severe disease from COVID-19. We recommend sharing it with your doctor to complete.

COVID-19’s impact on racial and ethnic minority groups

Recent data tells us that some racial and ethnic minority groups are at increased risk of getting COVID-19 or experiencing severe illness, including non-Hispanic black persons, Hispanics and Latinos, and American Indians/Alaska Natives. The CDC is developing strategies to collect data from healthcare systems to better understand this disparity, supporting partnerships with community-based groups, and providing accessible information on how to slow the spread of the virus. NKF has also been advocating on the federal level to put resources towards addressing this issue.

We will continue to update this page as information from these efforts becomes available. In the meantime, we encourage everyone in our community to follow CDC guidelines to reduce  risk of exposure or spreading the disease to others (including getting vaccinated), and to seek medical care if you have symptoms. In addition, check out our Guidance for Returning to Work section (above) for paid leave or work accommodation options, and explore ways to cope with stress and connect with others while limiting face-to-face contact.

Guidance for dialysis treatments

If you are a dialysis patient, you may be at higher risk for becoming seriously ill from COVID-19 but it’s important that you do not miss your treatments. If you feel sick, please be sure to tell a member of your healthcare team. The National Kidney Foundation has up-to-date information on clinic closings and emergency resources. The CDC and American Society of Nephrology have also provided guidance to dialysis centers to help them identify and handle suspected cases of COVID-19 and to minimize exposure to other patients. If you’re concerned, here are some questions you can ask the staff at your center:

• Can I wait in my car instead of in the waiting room?
• What should I do if I have any flu-like symptoms?
• Can you provide a mask for me to wear during my treatment?
• What procedures do you have in place if you suspect a patient at the center may have COVID‍-‍19?
• How will you inform patients of any emergency information?
• Where will I receive dialysis if I get sick?
• Are you offering telehealth options for regular clinic appointments?

Check out this 3-Day Emergency Diet Plan; it does not take the place of dialysis but can reduce the waste that builds up in your blood in an emergency where you are unable to get to your treatment.

The  Kidney Community Emergency Response Coalition provides assistance to patients who are having difficulty contacting their dialysis facility, provider, or ESRD Network.

Guidance for transplant patients

If you received a transplant (e.g., kidney), due to your need for immunosuppressive drugs, you may be at higher risk for becoming seriously ill from COVID-19. You may be able to get a medical exemption and should discuss with your workplace and/or transplant team. For other guidance, stay in close contact with your transplant center for recommendations.

If you feel sick, please be sure to tell a member of your healthcare team. If you’re concerned, here are some questions you can ask the staff at your center:

• What should I do about having medications on hand?
• If I am feeling sick, should I contact my primary care doctor?
• If I am feeling sick, should I contact the transplant center?
• Should I wear a face mask when I need to have labs?

While the effectiveness rates of COVID-19 vaccines are very good, we now know that people who are on immunosuppression medications for the treatment of advanced kidney disease and kidney transplant recipients, may not receive the same level of protection, also known as antibody immunity, from the COVID-19 vaccine as people who are not on immunosuppressive medication. The CDC recommends that these individuals receive an additional dose  of mRNA COVID-19 vaccine (Pfizer or Moderna) at least 28 days after their second dose.

The American Society of Transplantation currently recommends that transplant recipients:

• Get vaccinated pre-transplant if feasible (living donor transplant scheduled or on the kidney transplant list)
• Get vaccinated as soon as recommended by your transplant team, and ask those in your household to get vaccinated to reduce exposure risk
• Continue taking your immunosuppressive medications at the time of vaccination to avoid the risk of organ rejection until more data is available
• Continue adherence to all transplant recipient protective measures including masking and social distancing regardless of vaccination status

Guidance for transplant candidates

The risk of getting COVID-19 from organ donation is low. Information about recent travel and exposure history is being asked about deceased donors. Living donors that have traveled to high-risk areas, have been exposed to the virus or are currently being evaluated for COVID-19 will generally be asked to postpone donation for 14 to 28 days.

If you are a transplant recipient or are currently waiting for a kidney transplant, contact your transplant center directly with questions. For additional resources and information, visit the United Network for Organ Sharing (UNOS).

Guidance for pediatric patients

So far, it is not well understood whether pediatric kidney disease patients are at a higher risk for more serious illness, but pediatric nephrologists recommend following the advice from the CDC that has been issued for the elderly, especially if they are receiving immunosuppressive drugs. Many schools are already closing but consult your nephrologist if your child’s school is still open and you’re considering keeping them home.

Visit the CDC for tips on keeping children healthy while school is out.

Pediatric Multi-System Inflammatory Syndrome Potentially Associated with COVID-19

You may have heard or read about a serious inflammatory syndrome in children associated with COVID-19. It is very early and this condition is also rare. Pediatric experts in intensive care, cardiology, rheumatology, infections disease and Kawasaki disease have reviewed data from cases in Europe and the United States and have offered guidance for clinicians. If this is suspected, contact your child’s pediatrician.

Symptoms observed in children have included:

• Fever
• Rash
• Conjunctivitis
• Red, swollen hands
• Red, cracked lips

Guidance for patients taking tolvaptan

Tolvaptan is a medication approved by the FDA to help slow the progression of autosomal dominant polycystic kidney disease (ADPKD). So far there have been no specific warnings related to tolvaptan and COVID-19.

Continue to follow the advice provided in the patient information leaflet that comes with the medication. This includes that you should: consult your doctor if you have nausea, vomiting, fever, tiredness, loss of appetite, pain in the abdomen, dark urine, jaundice (yellowing of skin or eyes), itching of your skin or joint and muscle pain with fever. These could be signs your liver is not working properly.

Fever can also be a sign of COVID-19. In light of the COVID-19 outbreak, call your care team if you develop such symptoms.

Also ensure that you drink enough water when taking tolvaptan as well as continue to complete your scheduled blood work as directed by your nephrologist.

Stress and anxiety

Stress associated with the outbreak of COVID-19 is normal and may be different for each individual experiencing symptoms of stress or anxiety. Stress may include:

• Fear about your own health or about the health of someone you care about
• Difficulty sleeping or changes in sleep patterns
• Changes in eating patterns
• Difficulty concentrating
• Chronic health problems can worsen
• Increased use of alcohol, tobacco or other drugs

Things you can do:

• Give yourself a break from news and social media
• Take care of yourself
• Deep breathing or meditation
• Eat healthy, well-balanced meals
• Exercise
• Get plenty of sleep
• Find time to relax and unwind
• Find time to do things you enjoy
• Connect with others and discuss how you are feeling

Learn more about helping children cope here.

Kidney-friendly shelf-stable items for your pantry

If there is a virus outbreak in your area and you need to decrease your risk of getting sick, it’s important that you have shelf-stable food (foods that last a long time without spoiling, such as canned foods) in your home. It’s important to prepare now by stocking up two to three weeks’ worth of healthy, kidney friendly foods, fresh water, and medicines. This will help reduce your risk of infection by allowing you to avoid crowded spaces like grocery stores and drug stores.

More information about how to get your home ready and updates about COVID-19 can be found on the CDC website or your local health department.

If you have any other questions or concerns please email us at pkdconnect@pkdcure.org or call 844-PKD–HOPE (844-753-4673).

These recommendations will most likely change or evolve. For the most up-to-date information, reference your local hospital’s website, your local government’s website, and guidelines from the CDC.