Coronavirus (COVID-19) and polycystic kidney disease

Updated 26 March 2020, 7pm.

In this article we provide the latest information on coronavirus (COVID-19) for people with polycystic kidney disease (PKD).

If you have PKD, whether or not you’re at increased risk of getting seriously unwell from COVID-19 depends on your kidney function:

• People with PKD but normal or only mildly reduced kidney function are probably at no higher risk of getting seriously unwell from COVID-19 than the general population. Normal or mildly reduced kidney function means you have an eGFR or 60 or higher (also called CKD stage 1 or 2). You must follow government advice on staying at home and away from others.
• People with chronic kidney disease (CKD) stage 3, 4, or 5 are at higher risk of getting seriously unwell if they get COVID-19. People with these stages of CKD have moderate or severely decreased kidney function (eGFR 59 or below). You must be especially careful to follow government advice on staying at home and away from others.
• People who have had a kidney or liver transplant are thought to be at extremely high risk of getting seriously unwell if they get COVID-19. You must take additional measures to stay away from others, known as shielding.

We explain these precautions below.

What are the symptoms of COVID-19?
How can people with PKD protect themselves?
What about people who have had a kidney or liver transplant?
What if you have COVID-19 symptoms?
What if a household member has symptoms?
What about people who are due to have a transplant?
Pregnancy, ADPKD and COVID-19
Are people with hypertension at greater risk from COVID-19?
Extra advice for people taking tolvaptan
Will there be a shortage of prescription medications due to COVID-19?
How can I cope?
Advice on work and money
Where to get the latest advice

What are the symptoms of COVID-19?

The COVID-19 virus causes:

• a high temperature (38^oC or more)
• coughing repeatedly
• shortness of breath.

These symptoms are similar to a cold or the flu.

How can people with PKD protect themselves?

Whatever your kidney function, you must follow general government advice on:

• staying at home and away from others if you don't have symptoms (staying at home)
• staying at home if you have symptoms (self-isolation)

Please read carefully and follow all the advice in in the links above.

If you have had a transplant, please see additional information on shielding later on this page.

Ensure that your kidney centre has up-to-date contact details for you, so they can get in touch regarding changes to services or appointments. Your kidney unit is likely to be in touch (if they have not been already) about your treatment plans. You may also wish to check their website for advice.

Staying at home is especially important for at-risk groups including those:

• aged 70 or older (regardless of medical conditions)
• under 70 and with CKD stage 3, 4, or 5, chronic liver disease, or a weakened immune system due to medicines

See also additional advice below on what to do if a household member as symptoms of COVID-19.

What extra steps should people who have had a transplant take?

People who have had an organ transplant are thought to be at extremely high risk of serious illness from COVID-19. You’re advised to take extra measures to protect yourself. This is called shielding. See the gov.uk website for latest advice of shielding.

At the time of writing, shielding included:

• Staying at home at all times.
• Avoiding all face-to-face contact (until otherwise advised).
• Visits from people who provide essential support to you should continue, but people must stay away if they have COVID-19 symptoms.
• All people coming to your home should wash their hands with soap and water for at least 20 seconds on arrival and often.
• Have an alternative list of people who can help to care for you if your main carer becomes unwell.
• Contact your local council for advice on how to access care.

If you are taking immunosuppressants, don’t stop your immunosuppression unless a transplant specialist recommends this.

Stopping your immunosuppression could:

• put your donated organ at risk
• increase the chances of requiring a hospital admission
• further increase the need for immunosuppression medicines and even invasive tests i.e. a biopsy.

What if you have COVID-19 symptoms?

This advice is for everyone with symptoms. If you have a high temperature or have a new frequent cough, stay at home for 7 days from when symptoms start (i.e. ‘self-isolate’). Use the online NHS coronavirus advice service. Call 111 if you cannot use the online advice. You should not even go out to the shops: ask a friend or relative to go for you.

See gov.uk for full advice on self-isolation.

Don’t visit your GP or the kidney unit if you have symptoms (see later on this page for information for those on dialysis).

If you’re taking tolvaptan and have a fever, use the online NHS coronavirus service for advice and call your kidney centre. Ring 111 if you can’t get advice online. See later on this page for more information.

Self-isolation can be a difficult time. We encourage you to support one another through our PKD Charity online groups.

What if a household member has symptoms?

If a household member has a high temperature or has a new frequent cough, you should self-isolate for 14 days from when their symptoms start (i.e. ‘self-isolate’).

If you’re elderly or have a higher risk from COVID-19 (including because you have PKD or a weak immune system), leave your home and stay with friends and family until the isolation period of your household member finishes.

If it’s not feasible for you to move out temporarily, stay away from others in the house as much as you possibly 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 2 metres (3 steps) 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.

See gov.uk for full advice on self-isolation. Visit the online NHS 111 coronavirus service for advice. Ring 111 if you can’t use the online service.

How can I get food and other essentials if I am self-isolating?

If possible, don’t go out even to buy food or get medicines. Order by phone or online or ask friends or relatives. Contact your council to ask what services they can provide or contact a charity or voluntary group such as Covid Mutual Aid UK.

If you are extremely high risk, you can now register for a service to give you support, for example with getting supplies.

Register Here

Extra advice for people on dialysis

Dialysis centres are still open and are providing dialysis. You might need to be more flexible about appointments with your dialysis centre. Services for transporting patients might be delayed – be patient. Let your dialysis centre know if you’re having problems getting to and from appointments.

We have heard that patients on home haemodialysis and peritoneal dialysis have been advised to 'self-isolate'. Your kidney unit will contact you with more information and details about getting regular blood tests when needed.

Try to avoid public transport. If you’re going to your dialysis centre, try not to arrive early. If you do, see if you can wait outside rather than in the waiting room. Some centres may have special arrangements such as:

• Having discussions with you on the phone rather than face to face where possible
• Arranging home delivery of medicines
• Asking you to attend a local service rather than the dialysis centre for blood tests

If you’re on dialysis and you or a household member have COVID-19 symptoms, visit the online NHS 111 coronavirus service for advice. Ring 111 if you can’t get online advice. Also call your dialysis team if you have a fever because it could be a sign of an infection from your dialysis. If you have a haemodialysis session coming up, call your dialysis centre to make special arrangements for your kidney care – don’t visit the dialysis centre before calling.

What about people who are due to have a transplant?

If you’re scheduled to have a kidney transplant soon (or are on a waiting list for a kidney or liver transplant), it is possible that the procedure will be delayed due to the COVID-19 outbreak.

If you’re due to have a living organ donation and recently had tests to confirm the suitability of your donor, it’s possible that your transplant will be delayed. Transplant centres are deciding what it is best to do bearing in mind risks to patients of delaying surgery versus risks posed by the COVID-19 outbreak. Your transplant team will be able to provide more information.

If you and a potential living donor were due to have tests to confirm suitability (i.e. whether or not they are a good match) in April, it’s likely these tests will be postponed.

Transplant centres are putting in place testing for COVID-19 for all living and deceased donors.

Pregnancy, ADPKD and COVID-19

So far, there is nothing to suggest that pregnant women have more severe symptoms from COVID-19 that other women. The disease hasn’t been linked to problems with babies’ development. However, it is a new disease and we cannot say for sure how it affects pregnancies.

If you’re pregnant and have ADPKD, please follow advice on staying at home and away from others carefully. Have careful monitoring as usual. Where possible, some of your appointments may be conducted by phone. Contact your antenatal clinic if you have questions or concerns.

If you’re planning a pregnancy, please consider:

• At the moment, experts cannot be sure how COVID-19 affects pregnancies.
• Health services might find it harder to provide additional pregnancy monitoring during the pandemic.

Consider with your partner whether it’s best to postpone trying for a baby. You can find further information on the Royal College of Obstetricians and Gynaecologists website.

Are people with hypertension at greater risk from COVID-19?

Experts say there is no evidence that people who already have high blood pressure (hypertension) are more likely to get seriously ill from COVID-19 than people with normal blood pressure. Experts strongly recommend that people taking medication to reduce their blood pressure continue to do so.

Extra advice for people taking tolvaptan

Jinarc^® (tolvaptan) is a medication to help slow the progression of autosomal dominant polycystic kidney disease (ADPKD). We are not aware of any specific warnings related to tolvaptan and COVID-19.

People taking tolvaptan should read and 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.

In light of the COVID-19 outbreak, we recommend you call 111 as well as your renal centre for advice if you have these symptoms. Fever can also be a sign of COVID-19.

Please also take care to drink enough water when taking tolvaptan as advised in the patient information leaflet.

Will there be a shortage of prescription medications due to COVID-19?

There are no drug shortages currently being reported due to COVID-19, according to the Association of the British Pharmaceutical Industry (ABPI). The government and pharmaceutical industry have strong plans in place in the event that drug manufacture and supply is affected by COVID-19.

How can I cope?

The threat of COVID-19 and the changes that we are all needing to make our lives are putting every one of us under immense strain. We understand that if you’re in a high-risk group or self-isolating, this is an especially worrying, stressful and lonely time.

We encourage you to support one another through our online PKD Charity groups and stay in touch with family and friends by phone or online. However, try not to spend too much time on news streams and Social Media.

MIND and Every Mind Matters have advice on emotional wellbeing and mental health and how to cope in the coronavirus outbreak.

Advice on work and money

The Money Advice Service has information on entitlements for people whose income is affected by during the COVID-19 pandemic. It has advice on sick pay and financial support for those in employment, self-employed, running a business, redundant, or receiving benefits.

Where to get the latest advice

The picture on COVID-19 is changing fast. Check the below websites for the latest information:

• NHS
• gov.uk
• Kidney Care UK

You may also wish to check the website of your kidney centre, dialysis centre or transplant centre for their latest advice.

Please do not rely on this page for information and advice as it is likely to become out of date quickly.

This page was written based on the latest information from NHS England, Public Health England, the World Health Organization, the European Centre for Disease Control and Prevention, the Renal Association, Kidney Care UK, the British Transplantation Society, NHS Blood and Transplant, The Transplantation Society, European Society of Cardiology, European Renal Association – European Dialysis and Transplant Association, tolvaptan patient information leaflet.

Last updated 26 March 2020,  7pm.