Coronavirus (COVID-19) and polycystic kidney disease
Updated 1 June 2020, 8:30am.
In this article we provide the latest information on coronavirus (COVID-19) for people with polycystic kidney disease (PKD).
- There is nothing to suggest that people with PKD and normal or only mildly reduced kidney function are at 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 (called 'staying alert and safe' or 'social distancing'.
- People with chronic kidney disease (CKD) stage 3, 4, or 5 are at moderate 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 (called 'staying alert and safe' or 'social distancing').
- People who have had a kidney or liver transplant or are on dialysis 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.
What are the symptoms of COVID-19?
How can people with PKD protect themselves?
What extra steps should people who have had a transplant take?
What extra steps should people who are on dialysis take?
What if you have COVID-19 symptoms?
What if a household member has symptoms?
How can I get food and other essentials if I am self-isolating or shielding?
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
The COVID-19 virus causes:
- a high temperature (37.8oC or more)
- coughing repeatedly
- anosmia (loss or or change in normal sense of smell).
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 alert and safe social distancing)
- staying at home if you have symptoms (self-isolation)
- staying homes and shielding if you have had a kidney or liver transplant or are on dialysis.
The links above are for England. Rules may differ for Scotland, Northern Ireland and Wales. Guidance might change quickly over the next few months as governments react to numbers of people with the virus going up or down. Read and follow the advice for your nation carefully.
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.
It’s a good idea to keep a note of any medications that you take and any recent test results. This is so that, if you do get COVID-19 symptoms, you can share this information with doctors caring for you.
See also additional advice below on what to do if a household member has symptoms of COVID-19.
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. The government has started to ease some rules regarding staying at home. However, they still recommend shielding for those who are at extremely high risk.
You should also receive a letter from the NHS ‘officially’ confirming that you are on the ‘Shielded Patient List’. Most people will have received a letter by 30 March. The NHS is sending out more letters. If you haven’t received a letter and believe you meet the criteria for being extremely high risk, please contact your kidney unit, specialist or GP.
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.
People who are on dialysis should shield (the Chief Medical Officer announced this on 27 April 2020). The UK government has started to ease some rules regarding staying at home. However, they still recommend shielding for those who are at extremely high risk.
Dialysis centres are still open and are providing dialysis. Staff are taking extra precautions to avoid the spread of infection. For example, all dialysis staff should be wearing disposable plastic aprons, gloves and a surgical mask.
Don't stop going to your centre for dialysis (see below on what to do if you have symptoms of COVID-19). 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.
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, ask if you can wait outside rather than in the waiting room (eg in your car). 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.
This advice is for everyone with symptoms. If you have symptoms, stay at home for 7 days from when symptoms start (i.e. ‘self-isolate’). Follow the guidance on staying at home for households with possible coronavirus (COVID-19) infection. 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.
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.
If a household member has symptoms, you should self-isolate for 14 days from when their symptoms start. Follow the guidance on staying at home for households with possible coronavirus (COVID-19) infection.
If you’re at higher risk from COVID-19 (because you’re over 70 or have CKD stage 3, 4, or 5, chronic liver disease, or a weakened immune system due to medicines), 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.
Visit the online NHS 111 coronavirus service for advice. Ring 111 if you can’t use the online service.
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, support is available for you from the government (England), your local authority (Scotland, Wales) or local groups (Northern Ireland) to help you get food and medicines without leaving home.
Register here for help if you live in England. If you do not have any of the conditions listed, or you are on dialysis, or you have been advised to shield by your GP or a hospital doctor for other reasons, tick “Yes, I have been advised by my GP or clinician to shield”.
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, these tests will be postponed.
Transplant centres will be assessing the risk of living and deceased donors having 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.
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.
Jinarc® (tolvaptan) is a medication to help slow the progression of autosomal dominant polycystic kidney disease (ADPKD). The drug manufacturer, Otsuka, is not aware of any specific recommendations regarding tolvaptan treatment and monitoring during the COVID-19 pandemic.
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.
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.
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.
We’ve posted some ideas here on how to stay physically and mentally active during this challenging time. However, try not to spend too much time on news streams and Social Media.
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.
Working Families has detailed information on COVID-19 and your employment rights, and what financial support might be available.
The picture on COVID-19 is changing fast. Check the below websites for the latest information:
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 the Cabinet Office, NHS England, NHS Digital, Public Health England, the Renal Association, Kidney Care UK, the British Transplantation Society, NHS Blood and Transplant, The Transplantation Society, European Society of Cardiology, Otsuka Pharmaceuticals Europe Limited, the British Association for Paediatric Nephrology, the Nephrology Journal Club (#NephJC), NHS Inform Scotland, Llywodraeth Cymru Welsh Government, Community NI, and leading experts in kidney disease.
Last updated 1 June 2020