Information for patients with kidney disease, or on dialysis, or with a kidney transplant. Includes pointers to information for patients anywhere, plus particular arrangements for Edinburgh patients. Shortcut to this page: edren.org/covid We have separate guidance for Edinburgh staff on COVID-19.
Should I have the COVID vaccine? Almost certainly yes; read more.
- UK guidance
- Key points for patients (anywhere)
- Particularly for Edinburgh patients
- KEY QUESTIONS
- Contacting us
- UK Guidance for patients: COVID-19 – Guidance for patients with Kidney Disease (Kidney Care UK). Read it first! It has become quite long, but it is well-written, good, and up to date.
- Staff: UK guidance for professionals (Renal Association)
Key points for patients (anywhere)
- Don’t come to the Renal Unit or clinic (or any healthcare premises) if you have symptoms that could be Coronavirus, without getting in touch first. If you don’t need to come that day, you will most likely be asked to stay at home. The most common symptoms are fever, and a persistent, new, dry cough.
- DO NOT STOP ANY MEDICINES. That includes:
- Immunosuppressive drugs – drugs that affect the immune system, e.g. after a transplant, or for some immune kidney diseases (and see Key Questions, below).
- ACE inhibitors (drugs ending -pril such as Enalapril, Ramipril).
- Angiotensin receptor blockers (ARBs; drugs ending -sartan such as Losartan, Candesartan).
- Wash your hands, especially after meeting people.
- See COVID-19 – Guidance for patients with Kidney Disease – the UK point for the latest advice.
Particularly for Edinburgh patients
RENAL CLINICS – we are doing clinics again, but they are smaller, with longer between appointments, and they may be in a different place from previously. We are looking at lists of appointments to see who needs to come in person, and who could manage with a phone call or message, perhaps with a blood test.
We now have ways to get tests without a full clinic visit. You will get an appointment to go to a ‘Monitoring clinic’ at one of three places where they can weigh you, check your blood pressure, and send blood and urine tests. We’ll look those up later and be in touch by phone or videolink. The clinics are all on Monday mornings, at one of these three places:
- The Lauriston Building in Lauriston Place, near the old Royal Infirmary. Note no parking here.
- East Lothian Community Hospital, Haddington. Parking available .
- St John’s Hospital, Livingstone. Parking available.
DIALYSIS – this must carry on as near-normal as possible. Patients with COVID-19 infection will be kept apart. Dialysis patients will be given individual information, but should follow the UK-wide guidance about isolation linked above. If you are unwell, call your dialysis unit before travelling. Do not miss dialysis sessions without speaking to us.
TRANSPLANTS AND TRANSPLANT CLINICS – Many centres have suspended parts or all of their transplant activity and the situation keeps changing.
Transplant patients working out what it is safe to do – discuss your risk with your team. It will vary by age, and if you have other conditions, and how much virus is about in the local community or your workplace. In time, whether you have been vaccinated also. If you are unwell with something that could be COVID-19, follow the same advice as given to the general public.
Note: More questions are answered in the UK guidance.
Should I have a COVID vaccination?
- Yes – almost certainly you should. You should be called for vaccination when it is available. Local arrangements will vary.
- All the vaccines available are safe for kidney patients. Early advice excluded people with a history of severe allergy (so severe that you need to carry an Epi-pen), but as of Jan 12th 2020 this advice has been modified to include many people in this category. If this could be you, please ask staff, or look up the latest advice – but make sure you are reading the latest official NHS advice, not Internet rumours.
- The additional risk of being on dialysis or having a kidney transplant (see next Q) is partially recognised in the current prioritisation of who to vaccinate first. We are arguing that the priority should be higher. More detailed information about all this from KidneyCare UK (actually, a lot of detail).
Are kidney patients at increased risk from COVID-19?
- Transplant patients are at high risk of getting severe COVID infection if they catch it. During ‘lockdowns’ they may be told to ‘shield’. The exact advice may depend on the risk of COVID in your area. Your risk will also be affected by your age and whether you have other conditions. You should discuss what is safe for you. More info.
- Dialysis patients are also at very high risk, and should also take very careful precautions. But your risk will also depend on your age and other conditions. Don’t miss dialysis, that would make things worse.
- CKD stage 3-5 (eGFR 59 or less) – risk at eGFR 50-60 is not much increased, but increases progressively as your eGFR falls lower, particularly below 20. The risk for anyone with eGFR less than 15 (stage 5 CKD) becomes closer to the risk for patients on dialysis. Again, it is affected by your age and other conditions.
- CKD stage 1 or 2 (eGFR 60+) – if you don’t have any other serious conditions, we believe you are not at increased risk. Two important exceptions could put you at high risk:
- Nephrotic syndrome – if you have a big protein leak into your urine at the moment, and low levels of albumin in the blood. Regardless of your GFR.
- Taking medicines that suppress the immune system to keep you well. Regardless of your GFR. See ‘What about immunosuppressant medicines‘, below.
- Risks are additive, so if you are older (e.g. over 60), or have other conditions, and have CKD, your risks are likely to be higher. Younger and fitter patients are less likely to get severe disease. Women are also less likely to get severe disease.
- If you catch it – patients who are at high risk are more likely to get seriously ill if they catch COVID-19. But it is important to remember that most who catch the infection recover. That is true even if you are in a group at highest risk.
Should I worry about high blood pressure, or ACE inhibitors or ARBs?
- Our advice is that if you are well, DO NOT STOP ANY MEDICINES unless we recommend it. If you were to become very unwell, this advice may change.
What about immunosuppressant medicines?
- Immunosuppression – drugs that knock back the immune system – increase your risk of many infections. The UK guidance now has a partial list to look at to help judge how badly that might affect you.
- Those at high risk include everyone with a transplant, but especially a recent transplant. Plus most other patients treated with combinations of immunosuppressive medicines. Those treated with cyclophosphamide or Rituximab in the last 6 months are also considered to be in the highest risk group.
- Patients on single immunosuppressant drugs will usually be at less severe risk, but still at some increased risk compared to others the same age. If you fall into this category without any other risk factors you should strictly follow social distancing advice.
- DO NOT STOP ANY OF THESE WITHOUT MEDICAL ADVICE FROM YOUR UNIT. The risk of having active disease (or rejection) is usually going to be worse than the risk from your medicines.
- If you are at home with definite Covid infection, and are taking any of these medicines under our care, you should contact us and ask whether to make any changes.
- If you were to become seriously ill, this would need to be discussed again with your team.
PKD and Tolvaptan
Patients with polycystic kidney disease (PKD) but no other conditions have the same risk as other patients with CKD. Test your eGFR against the ranges above (under ‘Are patients with kidney disease at increased risk from COVID-19?‘).
Some patients take Tolvaptan to slow growth of PKD cysts. Tolvaptan should not alter your risk from COVID-19. For those on Tolvaptan:
- It’s fine to stay on Tolvaptan if you are well. Stop it if you’re poorly.
- Patients on Tolvaptan must still have monitoring blood tests regularly, and the drug has to be issued from hospital. Once your treatment is settled and you are having regular tests, we’re now able to post it to you.
- We had suspended starting any new patients on Tolvaptan, as that involves several additional hospital visits, but resumed regular (but smaller) clinics in September 2020.
- If you have been given contact details for a particular department, or dialysis unit, use those.
- PatientView Messages – the messaging system inside PatientView is good for reasonably quick replies from someone who knows you. But not suitable for urgent messages. Re-send to another recipient if you don’t get an answer.
- But I’m not on PatientView. All Edinburgh patients are eligible to see their own results and letters online, and send messages that way. Go to patientview.org and click on ‘I want to join’ at the top right. A relative can do this for you with your permission.
- We are permitted to send emails to patients during this acute period, if you are happy with that. (NHS Lothian previously prohibited email to patients). But again, not suitable for urgent messages. And we’d need to verify your address.
- If it needs a reply soon, call us. At renal unit extensions you may get a renal unit ansafone message. We are picking up messages on normal working days, but there will be delays out of hours and at weekends, holidays.
- If it’s about COVID symptoms, go to the NHS Inform website to check your symptoms, or call 111. Make sure you mention that you are a renal patient.
- If it’s very urgent, call 999.
Acknowledgements: The author of this page was Neil Turner. It was first published 16 March 2020. The date it was last modified is shown in the footer.