COVID-19 (Coronavirus) risk and ADPKD

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.

Which people with ADPKD are at increased risk from COVID-19?

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)

 *eGFR stands for estimated glomerular filtration rate. This is a measure of how much blood your kidneys can filter in a minute. 

Deciding which steps to take to reduce your risk

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:

• Which steps are you willing to take on all or most days to reduce your risk?
• Which activities in your life are most important to you, or necessary?
• If you’re doing something that poses greater risk (such as going somewhere busy indoors), what can you do to reduce your risk?
• What can you ask others around you to do? 

How to reduce your risk of catching COVID-19

Here are steps you can take to reduce your risk of catching COVID-19 if you’re at increased risk.

Vaccination against COVID-19

• Keep up to date with your COVID-19 vaccinations, including boosters.
• Ask all adults in your household to keep up to date with their vaccinations.
• Consider children in your household aged 5 years and above getting vaccinated.

Meeting others

• Avoid crowded places.
• Meet friends and family outside if possible.
• If inside, keep the area well ventilated.
• Wash your hands regularly and avoid touching your face.
• When around people other than your household, keep socially distanced (2 metres apart) and wear a mask.
• Encourage others to wear a mask around you.
• Ask family and friends to consider taking a lateral flow test before visiting you.

Telling others that 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:

1. Say that you’re at increased risk.
2. Ask if the person is willing to help reduce your risk.
3. Explain the steps they can take.
4. Ask which steps they feel able to do.

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.

Work

• Consider working from home all or some of the time.
• Ask your employer how they plan to keep you safe.
• Agree on a plan with your employer.
• Download this Open Letter to Employers from the SafeAtWork Charity Coalition and give it to your employer – it highlights the need for ongoing COVID safe measures for staff at higher risk.
• See the government website for more information on your rights regarding work and COVID-19.

Advice from healthcare professionals

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.

If you get COVID-19

All people who get COVID-19 should follow government advice on reducing the risk of spread to others.

You can find information for England, Scotland, Northern Ireland and Wales on the main UK government website.

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.

Vaccination against COVID-19

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.

How well do COVID-19 vaccines work?

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.

Treatments for COVID-19

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:

1. You have CKD stage 4 or 5, or are receiving dialysis, or have had a kidney transplant (or are immunosuppressed for other reasons).
2. Your symptoms began within the last 5–7 days and are not improving.
3. You reported a positive COVID-19 result within the last 5 days.

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.

Getting support to help you cope

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:

• MIND
• Every Mind Matters
• Mental Health Foundation

We encourage you to join our online PKD Facebook Group for friendly support and tips. 

Supporting a friend or family member at increased risk

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:

• Respect the person’s decisions and take their lead – avoid being overly protective or downplaying the risks.
• Check in regularly with the person to see how they’re feeling.
• When meeting up face-to-face, ask beforehand what steps they would like you to take to reduce their risk.
• Gently prompt others to take these steps too.
• If you live together, agree on the steps everyone in the house will take to minimize risks.
• If you agree to take steps (such as wearing a mask or keeping an area ventilated), make sure you follow through with the plans.
• If you can’t meet face-to-face as regularly as you would like, make plans for catching up over the phone or internet.
• Help with shopping, errands or lifts to reduce avoidable risks.
• Listen.

Where to find more information

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