Kidney patients may be struggling to pinpoint the guidance they need amid the constant updates on coronavirus. Here are the answers to some of your biggest questions.
I think I have COVID-19 symptoms. What should I do?
If you have a new, continuous cough and a high temperature, the current advice is that you should self-isolate for 14 days (you’ll find the details of this below). You should not go to your GP or pharmacy and you should not go to your renal unit until you have spoken to them on the phone. If you are a dialysis patient, you should contact your dialysis unit so they can ensure continuity of care.
If during your 14 days of self-isolation your symptoms worsen, contact the NHS 111 coronavirus service and keep your dialysis unit updated on your condition. Don’t go directly to the unit until you know what arrangements have been made.
Transplant patients are being advised to self-isolate for 12 weeks regardless of whether they have symptoms. If you have a transplant and you think you might have COVID-19, you should inform your transplant unit and seek clinical advice immediately by calling the NHS 111 online coronavirus service or NHS 111 if you’re not online. If you’re seriously ill, call 999. Don’t go to your GP, pharmacy, urgent care centre or hospital.
If someone in your household develops COVID-19 symptoms, you should try to live elsewhere for the next 14 days. If that is not possible, keep apart from each other while in the same house.
Am I in a group that should follow the self-isolation guidelines?
While everyone should now be following the government’s guidelines on social distancing – which now include staying 2 metres away from other people and only leaving home for essential shopping, to exercise once a day and for medical reasons, certain groups have been advised to observe strict self-isolation for 12 weeks.These people include:
Anyone who has had a transplant
- Anyone over 70 who is on any form of immunosuppression or has been in the past
- Anyone whose kidney disease is caused by inflammation, a condition of your kidneys (sometimes called an autoimmune condition) AND is in one or more of the following patient groups:
- You are currently receiving intravenous cyclophosphamide treatment or rituximab treatment orhave done so within the last 6 months
- You are receiving cyclophosphamide treatment as tablets (oral treatment)
- You have received prednisolone at a dose equal to or above 20mg tablets every day for more than 4 weeks any time within the last 6 months
- You have received or currently are receiving more than 5mg every day of prednisolone for greater than 4 weeks taken with at least one other immunosuppressive type of medicine within the last 6 months.
- You suffer with nephrotic syndrome (sometimes described as protein leaky kidneys, usually due to minimal change disease, FSGS or membranous nephropathy) and are currently nephrotic (i.e. your protein leak is high/your ankles are swollen) or you have had more than one nephrotic (protein leaky) attack needing drug treatment during the last 6 months.
- For children, the medicine dose that puts them in the extremely vulnerable group may be lower, please contact your kidney team to clarify if they have not already done so.
- Inflammatory conditions of the kidneys include but are not restricted to: vasculitis, systemic lupus erythematosus (often called lupus), membranous nephropathy, minimal change disease, IgA nephropathy, FSGS, anti-GBM disease (Goodpasture’s disease)
- Immunosuppressive medications include: Azathioprine, Leflunomide, methotrexate, MMF, ciclosporin, tacrolimus, sirolimus and belatacept.
What is self-isolation?
Self-isolation, also called shielding, is designed to give you the best chances of avoiding contracting COVID-19 and is recommended for people whose age and/or health conditions indicate they may be more vulnerable to the most severe effects of the disease.
The rules of social isolation
You are strongly advised to avoid any face-to-face contact for 12 weeks, including with members of your household if possible. In particular, you must:
- Strictly avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough.
- Not leave your house.
- Not attend any gatherings. This includes gatherings of friends and families in private spaces, for example family homes, weddings and religious services.
- Not go out for shopping, leisure or travel and, when arranging food or medication deliveries, these should be left at the door to minimise contact.
- Keep in touch using remote technology such as phone, internet, and social media.
What does all this mean for kidney patients?
Here are some of the key points you need to be aware of:
Chronic kidney disease: anyone with CKD is classed as at risk, but the later your stage of CKD, the more vulnerable you are. Social distancing is important and you should take self-isolation/shielding measures if advised to do so.
Dialysis: you are classed as in an at-risk group so need to be stringent in sticking to self-isolation/shielding measures. If gaps between dialysis sessions are longer, take care with your fluid intake and diet. You should still go to dialysis in your usual way but be aware that patient transport services may be disrupted. Consider getting a member of your household, a family member or a friend to take you if you can. If you are on home dialysis, this should continue as normal. If you are on peritoneal dialysis and have frequent blood tests you may be asked to have the tests done locally rather than at your hospital.
Children: the advice on preventing transmission is the same for children as it is for adults. Children are generally less severely affected by coronavirus, with some displaying no symptoms. However, children on dialysis and at CKD stage 3, 4 and 5 should practice strict social distancing and as of March 22, children with a kidney or other organ transplant or immunosuppression for other auto-immune or inflammatory kidney conditions have been advised to strictly self-isolate. If a child is unwell or has a fever, you should discuss this with their kidney team. More information on children who are kidney patients and COVID-19 can be found here.
Women who are kidney patients and are pregnant
If you’ve had a kidney transplant you are automatically classed as ‘extremely vulnerable’ and advised to follow the shielding/self-isolation guidelines. Pregnant women with kidney disease are classed as ‘vulnerable individuals’ and should practice social distancing. It’s early days in terms of understanding how COVID-19 affects pregnant women, but at present there seems to be no link between pregnancy and more severe symptoms, nor any effect on the baby’s development. It’s important to carefully monitor any woman with kidney disease who is pregnant, but most appointments can be conducted by telephone during the coronavirus crisis.
For more detailed information for kidney patients, please see this advice from Kidney Care UK.
For information on how the charity can help during this time:
Befriending (Peer Support Service)
During this unprecedented time the charity will be providing telephone support to kidney patients, carers and family members through it’s careline 0800 038 8989. Patients can access this service between 9am to 6pm Monday to Sunday. The careline is manned by the charities Befriending (Peer Mentor) Team, who kidney patients, carers or family members who have been trained to become volunteers for the charity. They have first hand knowledge of what patients are going through during this time and can offer, advice, information, support or a friendly voice to just chat during this difficult time.
If patients, carers or family memebrs would like to chat to a Befriender outside of these hours or would like the volunteers to call them please call the same number to organize this or email firstname.lastname@example.org
The charity provides counseling services which will be available over the phone, to access this service, call the Careline number 0800 038 8989 or email email@example.com.
Home Therapies Kidney Café – https://www.facebook.com/groups/hometherapieskidneycafe/
This is a Support group for patients undergoing any type of home dialysis therapy. During this unprecedented time the group can be accessed on-line. To join the group and gain support from your peers type the address into your internet browser, or goto facebook, search ‘home therapies kidney café’ and ask to join the group.
Transplant Café – https://www.facebook.com/groups/SouthWalesKidneyTransplantCafe/
Support group for transplant patients.
(This is named ‘South Wales Transplant Café’ due to the face-to-face meetings taking place in South Wales, but North Wales patients are welcome to join the group and contribute).
During this unprecedented time the group can be accessed on-line. To join the group and gain support from your peers type the address into your internet browser, or goto facebook, search ‘South Wales Kidney Transplant Cafe and ask to join the group.
Kidney Café Parent’s & Carer’s Group – https://www.facebook.com/groups/kidneycafeparentsandcarers/
Support group for parent’s and carer’s of children with kidney disease. During this unprecedented time the group can be accessed on-line. To join the group and gain support from your peers type the address into your internet browser, or goto facebook, search ‘kidney café parents and carers’ and ask to join the group.
Walk for Health group – https://www.facebook.com/groups/ppfwalkforhealth/
A walking group for kidney patients of all abilities. The walk leader is a kidney patient and has designed the walks to be suitable for all patients who would like to join. Walks are currently suspended but normally take place once a month. To share walking routes or chat to like minded people, type the above address into your internet browser or goto facebook and search for ‘PPF Walk For Health’ and ask to join the group.
Llynfi Valley Kidney Café – https://www.facebook.com/groups/llynfivalleykidneycafe/
Support group for all kidney patients living in the Llynfi Valley area. During this unprecedented time the group can be accessed on-line. To join the group and gain support from your peers type the address into your internet browser, or goto facebook, search ‘Llynfi Valley Kidney Café’ and ask to join the group.
For further information on any of the above or anything else please call the charity main line 01792 654182 or email firstname.lastname@example.org