Coronavirus and PKD: What you should know
On December 11, 2020, the Pfizer-BioNTech Vaccine was approved for emergency use by the FDA in individuals above 16 years of age. On May 10, this was expanded to include adolescents 12 through 15 years of age. View the fact sheet for recipients and caregivers here.
On December 18, 2020, the Moderna Vaccine was also approved for emergency use by the FDA in individuals above 18 years of age. View the fact sheet for recipients and caregivers here.
On February 27, 2021, the Janssen (Johnson & Johnson) Vaccine was also approved for emergency use by the FDA in individuals above 18 years of age. View fact sheet for recipients and caregivers here.
Other vaccine trials are in progress, including those for children younger than 16 years of age.
The CDC recommends that all individuals over the age of 12 years receive a vaccine. These are available at many pharmacies around the country, as well as with your health care provider.
PKDF has put together some FAQs about the vaccines and how either may impact the PKD community. Read more here or check out our blog with a conversation between our Chief Research Officer and Dr. Patrick Dean, a transplant nephrologist.
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:
- 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.
How has COVID-19 affected you?
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 Committee 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.
Find more information on what COVID-19 is at the Centers for Disease Control (CDC) website.
COVID-19 Treatments and Prevention
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. There are no drugs or other therapies currently approved by the FDA to treat COVID-19. The best way to protect yourself is to talk to your doctor about getting the COVID-19 vaccine.
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.
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 the CDC is lifting social restrictions on fully vaccinated individuals, post-transplant patients should continue to practice COVID-protective behaviors and encourage those in their environments to get the vaccine to help protect them. Read about the latest results on antibody response in post-transplant patients from Johns Hopkins here.
Read more about the CDC’s recommendations for choosing safer activities after vaccinations here.
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.
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.
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?
Although the CDC is lifting social restrictions on fully vaccinated individuals, post-transplant patients should continue to practice COVID-protective behaviors and encourage those in their environments to get the vaccine to help protect them. Read about the latest results from Johns Hopkins here.
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:
- 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
- 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 firstname.lastname@example.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.
How has COVID-19 affected you?
What are the symptoms of COVID-19?
Symptoms can include fever, cough, shortness of breath, chills/repeated shaking, muscle pains, headache, sore throat, fatigue, and new loss of smell and/or taste, and can appear 2 – 14 days after exposure to the virus.
What measures should I take to protect myself from getting sick?
The CDC recommends that we all get a COVID-19 vaccine and practice every day preventive behaviors such as: stay home when you are sick, cover coughs and sneezes, wash hands frequently with soap and water, avoid touching eyes, nose and mouth, and keep surfaces that you touch frequently clean.
Am I more likely to catch COVID-19 because I have PKD?
Older adults and those with underlying health conditions, such as chronic kidney disease appear to be at a higher risk of complications if they become ill with COVID-19. Anyone at a higher risk, such as transplant recipients, should take extra precaution to avoid crowds and reduce the risk of being exposed to the virus.
Chronic kidney disease (CKD) stages 3-5 have been defined as being at an increased risk of severe illness from coronavirus. The CDC recommends that everyone get vaccinated to prevent the spread of the virus.
How do I know if I should be tested for COVID-19?
- If you develop symptoms (fever, cough, difficulty breathing) contact your health provider.
- If you have traveled to an area with ongoing spread of COVID-19 or you have been in close contact with someone diagnosed with COVID-19, contact your health provider.
- If you have underlying health conditions or are immunocompromised, contact your health provider at the onset of symptoms, even if the symptoms are mild.
- If you are experiencing severe symptoms, contact your health care provider or emergency room immediately.
- Your doctor must determine if you have signs and symptoms of COVID-19 and whether or not you should be tested.
What do I do if someone in my household shows symptoms of COVID-19?
Watch for symptoms such as fever, cough and shortness of breath in those living with you. If symptoms appear, isolate yourself for 14 days from that person. If you are elderly or have a higher risk from COVID-19, leave your home and stay with friends or family until the 14 days have ended. If it’s not possible for you to move out temporarily, stay away from others in the house as much as you can. This includes:
- Spend as little time as possible in shared spaces such as kitchens, bathrooms and sitting areas, and keep shared spaces well ventilated.
- Aim to keep 6 feet away from others and sleep in a different bed where possible.
- Use a separate bathroom if you can and use separate towels for drying after bathing, showering and washing your hands.
- If you do share a toilet and bathroom, others should clean it after use. After each cleaning, you should be the first to use it.
- Don’t use the kitchen when others are in it and take your food to your room to eat.
- If you have one, use a dishwasher. If you’re using your own utensils, dry them with a separate tea towel.
Everyone in your household should regularly wash their hands, avoid touching their face, and clean frequently touched surfaces.
If I recover from COVID-19, does that mean I’m now immune?
According to the CDC, the immune response to COVID-19 infection varies from person to person. It is believed, in the short-term, that people who recover from COVID-19 are unlikely to be reinfected with the virus. However, the length of time that someone may be immune is uncertain. The CDC recommends that everyone get the vaccine even if you’ve already had COVID-19.
What symptoms should I watch out for in my child?
In general, you should call your child’s doctor for the same reasons you would normally. Bringing your child to an ER or urgent care to get tested or for minor symptoms is currently not recommended since many sites are not offering testing and there is a risk of exposure to COVID-19 and other serious infections. Consider calling your child’s doctor and ask about getting your child tested if they have:
- Respiratory symptoms beyond a mild cough: difficulty breathing, rapid or deep breathing, or a severe cough
- Shortness of breath from continued coughing
- Refusing liquids with decreased urine frequency
- Crying without ability to be consoled
- Fever that is not responsive to fever reducing medications
- Behavior that is not normal for your child
What does community spread mean?
Community spread means that people living in specific communities are testing positive for the virus and this includes individuals that are not sure how they became infected.
How do I know if COVID-19 is spreading in my community?
To stay up to date on how COVID-19 is spreading in your local community, visit your state and local health department websites.
Should I keep my scheduled doctor appointments?
If you are experiencing symptoms of COVID-19, contact your physician’s office before going in so that the team can be ready to care for you and to protect staff and other patients. If you have routine medical or dental appointments, contact your health care team before deciding to cancel your appointment. All necessary appointments and treatments should be kept unless your doctor advises that you reschedule.
Should I be wearing a mask?
The CDC recommends that unvaccinated individuals wear a mask in public to slow the spread of the virus and help people who may have the virus but do not know it from transmitting it to others. The cloth face coverings recommended are not surgical masks (typically seen at hospitals) but can made with materials in your home.
If I get COVID-19, will my kidney function be affected?
There is no evidence that COVID-19 infection negatively affects the kidneys in those with mild to moderate infection. However, amongst those who develop severe infection and require hospitalization, kidney injury has been seen in 25-50% of subjects, and less than 15% develop a decline in filtration function of kidneys (acute kidney injury (AKI)). NKF also has information on AKI in patients with confirmed COVID-19 and the known short and long-term impacts. The long-term health effect of kidney injury on survivors of COVID-19 infection is not known.
What measures should be taken for dialysis patients?
If you are currently on dialysis, you should not miss a treatment. If you are feeling sick, notify your healthcare team immediately.
The American Society of Nephrology released new guidelines for dialysis centers to ensure necessary precautions are taken to keep patients safe and to prevent the spread of COVID-19.
I have had a kidney transplant and I am feeling sick. What should I do?
If you are feeling sick and experiencing symptoms associated with COVID-19, contact your health care team immediately.
Are kidney donors at an increased risk of catching COVID-19?
There is no evidence to suggest that living kidney donors would be at any higher risk than the general public of catching the virus and there should be no reason to expect donors to be at a higher risk of more severe illness if they do become ill with the virus.
How has COVID-19 impacted PKD research?
As communities reopened, many research activities resumed and staff are expected to follow precautions for personal protective behaviors and social distancing. Regardless, clinical trials and other research studies were slowed or halted based on CDC recommendations. The FDA announced their support of changes to study schedules, clinic visits and other forms of participation to protect the safety of participants. If you’re in a research study, contact your study team to find out how COVID-19 may impact your next study visit. Research done online or over the phone should not be impacted.
Basic research labs (non-human studies) at many universities in the US resumed research activities as well depending on the safety of the research staff. PKDF expects that the COVID-19 closures in early-mid 2020 will result in delays of the work and ultimate results of PKDF-funded research studies. If you’re a PKDF grantee and have questions about how this may impact your funding, please contact email@example.com.
Will the flu vaccine protect me against COVID-19?
Getting a flu vaccine will not protect against COVID-19, however flu vaccination has many other important benefits. Flu vaccines have been shown to reduce the risk of flu illness, hospitalization and death. Getting a flu vaccine this fall will be more important than ever, not only to reduce your risk from flu but also to help conserve potentially scarce health care resources.
Last Updated: July 8, 2021
Contributed by: PKDF Education and Research staff
Reviewed by: Michal Mrug, M.D. and Vishal Patel, M.D.