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.
- 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 – to reduce risk of infection, we will be looking at our clinic lists to see who needs to come in person, and who could manage with a phone call or message, perhaps with a blood test. We don’t want to increase work for GPs though, and you may be best avoiding the surgery unless essential. We are looking at ways to get tests without a full clinic visit.
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 – while hospitals were very busy with the epidemic, almost all stopped doing new transplants. Many centres are slowly beginning to restart transplants, often by opening up for lower risk operations first. Transplant patients have been strongly advised to self-isolate (UK guidance) or ‘shield’. However for patients with a transplant, it will be important that we keep monitoring it. We will be looking at our transplant clinic lists to see who needs to come in person, and who could manage with a phone call or message, with a blood test. 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.
Are kidney patients at increased risk from COVID-19?
- Transplant patients are regarded as very high risk, and have been told to ‘shield’ – very strict self-isolation where you avoid contact with anyone else as much as possible. More info.
- Dialysis patients are at similar risk to transplant patients and the same advice about ‘shielding’ (strict self-isolation) extends to them too. (This advice was made stronger on 2nd April). 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, 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. If your kidney function is as low as this you should follow social distancing guidance very strictly, and in Scotland you have probably had a letter telling you to ‘shield’.
- 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.
- If you catch it – patients who are at high risk are more likely to get seriously ill if they catch COVID-19. However even in high-risk patients, it is important to remember that most recover.
Should I be ‘shielding’; I have/ haven’t received a letter?
- Letters from Scottish Government about shielding should have reached all transplant and dialysis patients. Some other patients on heavy immunosuppression (see ‘What about immunosuppressant medicines’ below) may fall into the same category. Many others are judged to be at the next level of risk, where they should be very strict about self-isolation but ‘shielding’ is not felt to be necessary. The same applies to those with stage 4 or 5 CKD.
- We are aware that some people have been sent a letter about shielding when they have only stage 4 or 5 CKD, or have stopped their immunosuppression, or are on only a moderate dose of a single immunosuppressive drug. This goes beyond national recommendations about who should be shielding. However most of these people do need to be very careful, at least. Discuss this with your renal unit or your GP if you are unsure.
- If you are in a high risk group for Coronavirus and haven’t had a shielding letter, and need help, for example with shopping, there is a Scottish Government helpline.
Should I worry about high blood pressure, or ACE inhibitors or ARBs?
- No, 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 – read the section ‘Groups who should self-isolate‘ there.
- Those at highest risk include everyone with a transplant, plus most other patients treated with combinations of immunosuppressive medicines. Those treated with cyclophosphamide in the last 6 months or Rituximab in the last 12 months are also in the highest risk group.
- Patients on low or moderate doses of single 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 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. There is no reason to suspect that this affects 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. We’re finding the simplest and safest ways to do this while minimising visits, and expect to be in touch with everyone who has appointments coming up.
- Temporarily we are not starting any new patients on Tolvaptan, as that involves several additional hospital visits.
- 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. We are receiving a lot of calls, so at renal unit extensions you will most likely 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.