We provide some quick facts here on COVID-19 for people with autosomal dominant polycystic kidney disease (ADPKD).
Please use the hyperlinks on this page to find further information relevant to you. Your doctor, renal centre, dialysis centre or transplant centre should keep you up to date. Contact them if you’re unsure how services are affected or if you want health advice.
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. You will fall into this group if you’ve been told:
People with moderately or severely decreased kidney function are at increased risk of getting seriously unwell if they get COVID-19. They are classed as ‘clinically vulnerable’. You will fall into this group if you’ve been told:
People who have had a kidney or liver transplant, are on dialysis or who have CKD stage 5 are at extremely high risk of getting seriously unwell if they get COVID-19. They are classed as 'clinically extremely vulnerable'. People who are not receiving dialysis and have not had a transplant but who have CKD stage 5 are also classed as 'clinically extremely vulnerable'. If you’re in this group, the government advises you take extra steps to reduce your chance of catching COVID-19 (see later).
The shielding programme in England for people who are clinically extremely vulnerable to COVID-19 has now officially closed. Steps you can take to reduce your risk are below. It’s sensible to follow this advice when possible, but think about what is right for you too.
In addition to guidance from governments, your doctor might also recommend you take extra precautions. For example, if you’re on the transplant waiting list or had a transplant within the last 3 months, your transplant unit may advise you to shield.
Contact your dialysis centre, transplant centre, kidney specialist or doctor if you’re unsure what steps you should be taking or you’re anxious about your risk.
If you have Covid-19 symptoms (a runny nose, a headache, sore throat, fatigue (mild or severe), sneezing, a high temperature, a new continuous cough, or a loss or change in sense of smell or taste) or after testing positive on a lateral flow test, you should take a PCR test. This is different advice to the general public, and will give you the best access to new Covid-19 treatments for vulnerable patients. See here for the full guidance.
COVID-19 vaccines protect most people from coronavirus from getting seriously unwell within 3 to 4 weeks of having the jab. The effectiveness of the vaccine differs depending on brand (make of vaccine) and the variants of the virus that are circulating in the country. In late November 2021, a new strain of coronavirus called omicron (B.1.1.539) was discovered. It is not yet known how effective vaccines are against this strain.
If you have had two or more vaccine shots, there is still a chance you could catch COVID-19. However, you are less likely to get seriously unwell compared with if you hadn’t had the vaccine.
Vaccination makes it less likely that you will pass on the virus to other people, but there is still a chance you could pass it on. You still need to follow government advice on coronavirus even if you have had the vaccine.
You can find an explanation of how the vaccines work on the ZOE website.
We are getting a lot of questions about how well the COVID-19 vaccines work for people who are on dialysis. We understand why this information is so important to you.
Experts advise people on dialysis to have both doses of the COVID-19 vaccination and your booster (third) dose.
It’s likely that COVID-19 vaccines protect most people on haemodialysis from COVID-19. However, we don’t know for sure.
In a study in which people on haemodialysis received two COVID-19 vaccinations, over 8 in every 10 people (86%) produced antibodies that might protect them against COVID-19. These people had not had a coronavirus infection before.
How well our bodies fight an infection depends on more things that just antibodies. For example, immune cells need to work together to kill the virus. We therefore can’t say for sure that all people who make antibodies against COVID-19 are fully protected from the virus.
If you’re on haemodialysis and have had both COVID-19 vaccinations (and your booster), there is still a chance you could get COVID-19. It is important that you take steps to reduce your risk of catching COVID-19, even if you have received both vaccine shots.
We are getting a lot of questions about how well the COVID-19 vaccines work for people who have had a kidney transplant. We understand why this information is so important to you.
Experts advise people who have had a transplant to have three doses of the COVID-19 vaccination, followed by a booster.
It’s likely that COVID-19 vaccines protect some – but not all – people who have had a transplant from COVID-19. However, we don’t know for sure.
In a study in which people who have had a transplant received two COVID-19 vaccinations, over 5 in every 10 people (55%) produced antibodies that might protect them against COVID-19. These people had not had a coronavirus infection before.
If people taking immunosuppressants have a third full dose of the vaccine, this probably increases the number of antibodies they have against the virus. We are waiting for more results from clinical trials before we know for sure.
If you’re taking immunosuppressants and aged 12 years or older, your doctor should offer you a third dose of the vaccine soon (if they haven’t already). Ideally, you should have your third dose at least 8 weeks after your second dose. 3 months after that, you can have a booster. See diagram below.
How well our bodies fight an infection depends on more things that just antibodies. For example, immune cells need to work together to kill the virus. We therefore can’t say for sure that all people who make antibodies against COVID-19 are protected from the virus.
If you’ve had a transplant and have had COVID-19 vaccinations, there is still a good chance you could get COVID-19. See earlier on this page for steps you can take to reduce your risk.
If you have had a transplant, it is important that you take steps to reduce your risk of catching COVID-19, even if you have received both vaccine shots.
Any patients who are severely immunosuppressed who have experienced difficulty obtaining the third dose, we are pleased to let you know that new NHS guidance has been issued that will enable you to receive this. Letters to your consultant or GP can be printed off and shared with them if required.
A ‘booster’ is a COVID-19 vaccine jab given at least 3 months after your initial COVID vaccine doses. A number of clinical trials have shown that boosters increase protection against COVID-19.
Most people aged 16 and older who are at higher risk from COVID-19 should have been offered a booster jab by now. This includes people who have chronic kidney disease stage 3, 4 or 5 (including patients on dialysis).
People aged 16 or older who live with someone taking immunosuppressants can also get a booster.
Experts in kidney disease recommend that you take up this offer of a booster. Over winter 2021, boosters will be offered to all people aged 18 years or more.
People who are severely immunosuppressed taking immunosuppressants (including after people who have had a transplant) have now had a third dose of the vaccine (see above). This is different to a booster because it is a full-strength dose, whereas booster doses are sometimes smaller. In November 2021, the government announced that people who are severely immunosuppressed will be offered a booster dose (a fourth dose), after their third vaccination.
Antibody tests can be used to see whether you have had COVID-19 in the past. They can also be used for research to see if your body made antibodies against COVID-19 after you had a COVID-19 vaccine.
Even if one of these tests shows that you have antibodies to COVID-19, this doesn’t prove you’re immune to COVID-19. You might still be able to catch the virus.
You can learn more about these tests on the ZOE website. Kidney disease experts recommend that you do not purchase tests for checking antibodies. Many are unreliable so the results cannot be trusted.
Read this guide on how the Covid-19 vaccine helps to protect and why you shouldn’t interpret the results of an antibody test as an indication of protection from infection.
On the NHS website you can find out more about the vaccines, including how it is given, how well it works, and possible side effects.
People who have high blood pressure (hypertension) are probably no more likely to get seriously ill from COVID-19 than people with normal blood pressure. If you’re taking medicine to reduce your blood pressure, keep taking it.
Stopping your immunosuppression could put your donated organ at risk and increase the chance of you needing hospital treatment.
Fever is a possible sign of COVID-19. For people taking Jinarc® (tolvaptan) for ADPKD, fever can also be a sign of liver problems. Please read and follow all advice provided in the leaflet for tolvaptan.
If you’re taking tolvaptan and have a fever, use the online NHS coronavirus service for advice. Ring 111 if you can’t get advice online. Also call your kidney centre for advice.
Please follow the instructions your dialysis centre provides. For example, there may be limits on how many people can go with you and the times you can arrive at the centre. Your dialysis centre may provide you with a special mask (a fluid-resistant surgical mask) to wear while travelling to appointments and while at the dialysis unit. These masks reduce the chance of spreading the virus.
The threat of COVID-19 and the changes that we have made to our lives are putting every one of us under 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. Stay in touch with family and friends by phone or online. Try not to spend too much time reading news or social media on COVID-19.
What are the symptoms of COVID-19?
What steps should everyone take to protect themselves and others?
What steps should people who are ‘clinically extremely vulnerable’ take?
Advice on work, money and COVID-19
Advice on employment, PKD and COVID-19
Citizens Advice Bureau on flexible working
Help shopping if you are self-isolating or shielding
England: local Covid Mutual Aid UK.
Scotland: your local authority.
Wales: your local authority.
Northern Ireland: local groups.
More advice on COVID-19 and kidney disease
Information on vaccines for the general public
Information on vaccines for people on dialysis or who have had a transplant
An explanation of how COVID-19 vaccines work
Information on antibody tests