A guide for people with autosomal dominant polycystic kidney disease (ADPKD) at increased risk from COVID-19 as well as their family and friends.
Many restrictions and rules put in place to reduce the spread of coronavirus have ended across the UK. It’s understandable that people at increased risk from the virus have concerns about how they can stay safe.
This guide is for people with ADPKD who are at increased risk of getting seriously unwell from COVID-19. This includes people who have moderate or poor kidney function, are on dialysis, or have had a transplant (see table below). The guide aims to help you understand the steps you can take to reduce your risk. This guide is also useful for family and friends who want to know how they can help.
The table below gives estimates of risk depending on your kidney function and kidney replacement therapy (dialysis or transplant). This is an estimate. It does not account for any COVID-19 vaccinations you have had or new strains of the virus. If you have additional risk factors (such as older age or other health problems), your risk may be greater than that given below.
COVID-19 vaccinations have reduced risks for most people. However, if your immune system is weakened (for example, because you have had a transplant), you’re still at higher risk.
Table: Risks of getting seriously unwell with COVID-19 in people with ADPKD (if unvaccinated)
Your kidney health |
Your kidney function |
Your eGFR* |
Your risk of getting seriously unwell if you get COVID-19 |
Chronic kidney disease (CKD) stage 1 or 2 |
60% or higher |
60 or more |
Similar to the general healthy population |
CKD stage 3 or 4 |
16% to 59% |
16–59 |
Moderate risk (vulnerable) |
CKD stage 5 |
15% or lower |
15 or below |
Higher risk (clinically extremely vulnerable) |
Receiving dialysis |
Higher risk (clinically extremely vulnerable) |
||
Have had a kidney transplant |
Higher risk (clinically extremely vulnerable) |
*eGFR stands for estimated glomerular filtration rate. This is a measure of how much blood your kidneys can filter in a minute.
Below we suggest some ways you can reduce your risk of catching COVID-19. It’s your choice which steps you take. It's about finding the right balance for you.
If you’re at increased risk from COVID-19, it’s important to reduce your risk of infection. However, an active life, rewarding work and socialising are important to your mental health and quality of life. , Seeing friends and family (including physical contact), being part of the community and physical activity can all boost mental wellbeing. We understand that the risks associated with these activities might be sources of worry for you at the moment.
Take some time to work out how best you can balance reducing your COVID-19 risk with the other needs in your life. Your views might change over time and vary depending on the COVID-19 rates in your area.
Talking to others can help you to weigh up the pros and cons of different activities. However, the choice is ultimately yours. Don’t be pressurised or do things to please others if it will cause you anxiety or unhappiness or risk your health.
To help you make decisions, ask yourself:
Here are steps you can take to reduce your risk of catching COVID-19 if you’re at increased risk.
Many of us have had times when our views on COVID-19 risk have differ with others. This can cause tension and worry. Especially as government rules ease, you might find that others seem less aware of your risk.
A friendly reminder can help.
Here are four steps to having those conversations:
You don’t need to give details of your health to have conversations about reducing your risk.
If individuals are asked if they’re willing to help, few will say no. For tips on how to communicate your feelings effectively without things getting heated, see PsychCentral.
Follow additional advice from your doctor and other health professionals on ways to reduce your risk. They can also help you to weigh up risk and adapt your approach to suit your life.
Contact your dialysis centre, transplant centre, kidney specialist or doctor if you’re unsure what to do or you’re anxious about your risk.
All people who get COVID-19 should follow government advice on reducing the risk of spread to others.
If you’re at higher risk and catch coronavirus, medicines are available to help you fight the virus. It’s important you report your positive test right away. See ‘Treatments for COVID-19’ below.
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.
How many vaccine doses should you have?
The diagram below shows how many COVID-19 vaccine doses you should have depending on your age and risk. This information was accurate in March 2022.
In the general population, people who have had COVID-19 vaccinations are less likely to catch coronavirus. They’re also much less likely to get seriously ill if they do catch the virus.
COVID-19 vaccines also appear to work well in people with kidney disease who are not immunosuppressed. Although you might still catch the virus, you’re unlikely to get seriously unwell. This is thought to apply to people with CKD stage 1–4 and people on dialysis (unless they have a weakened immune system for other reasons).
COVID-19 vaccines might work less well in people who are immunosuppressed. This includes people taking immunosuppressant drugs due to a kidney transplant. Experts think the vaccines do offer some protection and so are still worth having.
For information on the benefits and risks of COVID-19 vaccination in people with kidney disease, see Kidney Care UK and Kidney Research UK.
Adults who are at higher risk of getting seriously unwell from COVID-19 can get medicines to help fight the infection. You could be offered one of these if you meet all the criteria below:
These medicines reduce the chance that you’ll get seriously ill from COVID-19. They also reduce the chance you’ll need to stay in hospital. , , ,
Four medicines have been approved for use in adults. Two of these (sotrovimab and remdesivir) are also approved for use in children aged 12 and over. We give a little more detail in the table.
If you have symptoms of COVID-19, do a COVID-19 test right away. You need a positive test result to be prescribed one of these medicines. You must start taking them within a few days of your infection beginning for them to work.
You can either do a PCR test or a lateral flow test (LFT). Register your positive test result at gov.uk or by calling 119.
If you meet the criteria and live in England, Wales or Northern Ireland, a specialist team will contact you after you register your test result. Also contact your kidney healthcare team right away for advice. A doctor or specialist will explain whether you’re eligible for a COVID-19 treatment and how to get it.
If you meet the criteria and live in Scotland, you’ll need to call your local health board promptly if you think you’re eligible.
More information on how to get COVID-19 testing and treatments if your higher risk is available online for England, Wales, Northern Ireland, and Scotland.
Are you anxious, lonely or low as a result of the pandemic? If so, you’re not alone. Many people have had these feelings, including those who had to shield. Some people also tell us they feel that their increased risk is being forgotten or ignored, leaving them frustrated, angry or sad.
You might feel that your emotions can be explained by the impact that COVID-19 has had on your life. However, this does not mean you have to ‘rally through’ – support is available.
Support one another through our online PKD Charity groups. Also talk to friends and family about how you’re feeling. Try not to spend too much time reading news or social media on COVID-19.
Mental health problems have risen in people who needed to shield. If your mood or emotions are affecting your daily life, see your doctor. Talking therapies and medicines are available to help.
You can find advice on emotional wellbeing, mental health and how to cope in the pandemic from:
We encourage you to join our online PKD Facebook Group for friendly support and tips.
Are you a friend or family member of a person with ADPKD who is at increased risk from COVID-19? Do you wonder how you can support them? Here are some general tips:
What are the symptoms of COVID-19? |
|
What steps should everyone take to protect themselves and others? |
Government websites for England, Scotland, Northern Ireland and Wales |
What steps should people at higher risk take? |
Government websites for England, Scotland, Northern Ireland, and Wales |
Advice on work, money and COVID-19 |
|
Advice on employment, PKD and COVID-19 |
Citizens Advice Bureau on flexible working |
How COVID-19 vaccines work | ZOE COVID study website |
More advice on COVID-19 and vaccines for people with kidney disease |
|
Looking after your mental health | MIND, Every Mind Matters, The Mental Health Foundation, Breathing Space (Scotland), SAMH |
Tips for communicating your feelings | PsychCentral |