Coronavirus (COVID-19) Q&A for lung-transplant recipients

The coronavirus (COVID-19) outbreak is a rapidly developing situation in the UK. At Harefield Hospital we have taken steps to reduce non-emergency clinic appointments for patients who are well and will offer telephone appointments as an alternative option for patients who require medical advice. 

We are receiving an increased number of calls from patients and will attempt to answer some of the common questions below.

Last updated 3 July 2020.

What can I do to keep myself safe?
Am I at increased risk?
What should I do if I feel unwell?
Is there a treatment for COVID-19?
When is it likely that a vaccine for COVID-19 will be developed?
What should I do if I think I have been in contact with someone with COVID-19?
Should I self-isolate or work from home?
What should I do if I have a holiday planned?
Should I send my child back to school?
Will I still be able to access my medicines / do I need to stockpile?
How you can help
Tips for emotionall wellbeing

What can I do to keep myself safe? 

According to Public Health England (PHE) guidance all lung transplant patients are “extremely vulnerable persons” who have been so far asked to remain in self-isolation. This is called “shielding”.

From Monday 6 July restrictions on self-isolation for individuals termed as “ extremely vulnerable” will ease further.

Please note that you are still asked to “shield” until the 01.08.2020 BUT you will now allowed to:

  • Leave your home as long as you are able to maintain strict social distancing ie remain 2 metres apart
  • You can meet in a group of up to 6 people outdoors including people from different households as long as you maintain strict social distancing.
  • You do not need to maintain social distancing with other members of your family
  • Single adult households (either an adult living alone or with dependent children under 18) can form a ‘support bubble’ with one other household. All those in a support bubble will be able to spend time together inside each other’s homes, including overnight stay, without needing to socially distance.

As your Transplant team we welcome this development and we encourage you to follow the updated guidance. We consider exercise – especially outdoors- to be very important in maintaining the health of your transplanted lungs.  We also think that exercise is important to maintain your overall physical and mental wellbeing. We encourage you to take advantage of the easing of the restrictions to exercise outdoors.

Some advice on how to exercise safely outdoors:

  • Locate open spaces in your area. Choose the one that is likely to be less busy. For example an open field near your house might be better than your local park.
  • Try to exercise or go outdoors at times of the day when it is quieter (this may be early in the morning or late in the evening)
  • Always maintain social distancing when you exercise (two metres apart)
  • Follow stringent hand hygiene and don’t share your belonging such as a towels, cups or water bottles with others.

We also encourage you embrace the relaxation of rules regarding meeting with people outside your household. Socialising is important for your mental and emotional health. As your team we feel that meeting outdoors with up to 6 people while maintaining social distancing carries a low risk. We also encourage you to think about forming a social “bubble” for those of you that this is allowed (please note this is only for single adult households). You are most welcome to ask for our advice on specific cases.

Please also take extra care to adhere to social distancing rules:

  • Remain two metres apart when outdoors or when meeting anyone from another household
  • Good hygiene (as described below).
  • Avoid gatherings of any size.

You are still advised against:

  • Attending any form of gathering including private gatherings (such as meeting friends and family in a private garden)
  • Attending larger gatherings such as ceremonies (eg weddings) or religious services

From 1 August shielding is expected to end for extremely vulnerable individuals. This means that in effect:

  • you can go to work, if you cannot work from home, as long as the business is COVID-safe
  • you can go outside to buy food, to places of worship and for exercise but you should maintain strict social distancing
  • you should remain cautious as you are still at risk of severe illness if you catch coronavirus, so the advice is to stay at home where possible and, if you do go out, follow strict social distancing

Following the ending of shielding (from 1 August onwards), as your transplant team we encourage you to work from home if possible and we would be happy to support you to that effect. We also encourage you to always maintain social distancing and wear a mask in places were social distancing cannot be followed for example when you go in shops.

Updated information can be found here.

Updated information on how to stay safe outdoors including face coverings can be found here.

Please ensure you have registered as a vulnerable individual at:  www.gov.uk/coronavirus-extremely-vulnerable.

Patients and their families who have undergone transplant should follow national guidance as below in order to help prevent spread of the virus:

  1. Always carry tissues with you and use them to catch your cough or sneeze. Then bin the tissue, and wash your hands, or use a sanitiser gel.
  2. Wash your hands often with soap and water, especially after using public transport. Use a sanitiser gel if soap and water are not available.
  3. Avoid touching your eyes, nose and mouth with unwashed hands.
  4. Avoid close contact with people who are unwell.
  5. Social distancing measures such as avoiding face-to-face contacts, conducting business by phone or online, avoiding public places and reducing unnecessary travel are likely to reduce your risk of acquiring COVID-19 as well as reducing risk of ongoing transmission.

You should share this advice with friends and family. You can access latest updates from the NHS website: https://www.nhs.uk/conditions/coronavirus-covid-19/

Am I at increased risk?

There is very limited data on the relative risk of COVID-19 in patients who have had a lung transplant. Patients with chronic lung disease are known to be at increased risk of developing severe illness. It seems reasonable to consider that all patients who have had a lung transplant will be at increased risk of severe infection especially if they have established lung damage that has occurred since transplant. Patients requiring oxygen or NIV will most likely be at highest risk.

According to most recent data from NHS Blood and Transplant (NHSBT) 857 patients with an   organ transplant have been diagnosed with COVID-19. Of those, 20 patients were post lung transplantation (updated 29.05.2020). We currently have available information on the outcomes of the first 600 organ transplant patients who tested positive for COVID-19 (15 Lung transplant patients). Of those 600  patients 90 have sadly passed away with COVID-19. This means that the case fatality ratio is 15% and in more simple terms it means that 1 in 7 patients who tested positive have died. For the 15 Lung Transplant patients diagnosed with COVID-19 in the UK risk of dying is somewhat higher, but the numbers are too small to draw definite conclusions.

As your transplant team we feel it is important to share as much information with you as possible, accepting the inherent uncertainty and the possibility that a lot of this information will be revised as we understand more about this new virus. We can’t stress enough how important it is that these data are interpreted with a lot of caution for several reasons:

1. Testing was not as readily available in the beginning of the COVID-19 outbreak in the UK so patients with no or very mild symptoms will not have been tested. This means that the risk may have been lower if these asymptomatic/mildly symptomatic patients had been included. In fact, a recent large epidemiological study done in the UK suggests that the risk of a patient with an organ transplant may be up to 4 times higher than the risk the same person would have had if they hadn’t had a transplant.

2. These numbers are still very small, and the degree of uncertainty is huge.

However, there is growing literature worldwide and experience in our centre that some lung transplant patients can be severely affected (whilst other patients remain without symptoms). Respiratory viruses can affect transplanted lungs and  COVID-19 is no exception. We have no information yet as to which patients are at increased risk but as stated above, we suspect that established lung damage may put you more at risk as the lungs have less reserve.

Finally, there is no evidence that wearing a face mask will protect patients from catching COVID-19, however there is growing evidence that if people with symptoms (e.g cough) wear a mask this protects others from catching the virus. Do wear a mask if you have symptoms and encourage others to wear a mask. Please note that in the UK you are currently required to wear a mask when using public transport, a hospital or enclosed public spaces were social distancing cannot be adhered to.

All patients coming to our hospitals must wear a face covering while in our buildings. This does not have to be a medical/surgical mask, it can be made of cloth and be as simple as a scarf that ties behind the head while allowing you to breathe comfortably. If you do not bring a face mask/cover with you, you will be given one on arrival by a staff member at the hospital entrance. See government guidance on how to make a face covering.

What should I do if I feel unwell?

It is extremely important that you do not go directly to your transplant centre unless specifically advised to do so by a member of the transplant team.

The symptoms of COVID-19 are the same as many other problems in patients who have had a transplant which makes it difficult to decide the best course of action. You should monitor your symptoms closely, i.e. increased vigilance with spirometry is highly desirable if you have had a lung transplant or monitor for respiratory of cardiac symptoms if you have had a cardiac transplant. If you develop fever, cough or difficulty breathing you should call the transplant team on 01895 823737. If you are well (i.e. with no drop-in spirometry) it is likely we will ask you to call NHS 111 for access to local COVID-19 testing. If you are unwell you may be asked to attend the transplant unit.. If you are advised to come to the hospital, please stay in your car and call the on-call transplant doctor/nurse in charge to advise them that you have arrived. Do not enter the hospital without doing so. If there is clinical concern based on your history, a member of staff will come to meet you with protective clothing for you to wear and will direct you to the most appropriate place immediately.

Please continue to follow advice regarding social distancing and handwashing stringently.

Please remember that health issues unrelated to COVID-19 needing treatment can arise at any time and you may feel anxious about asking for medical help. We are now offering virtual consultations for all our transplant patients. We are able to assess and help you remotely. If needed, we will arrange a clinic consultation which can be carried out safely. Please get in touch with the transplant team with any concerns.

Is there a treatment for COVID-19?

There is currently no scientifically proven, effective treatment for COVID-19 apart from supportive care. There are many clinical trials currently ongoing including different agents such as azithromycin, remdesivir and tocilizumab amongst others. As a transplant team we are following the scientific developments very closely and we are also participating in a number of clinical trials.

When is it likely that a vaccine for COVID-19 will be developed?

Developing an effective vaccine  is dependent  on a number of factors. It is becoming clearer that people infected with the virus develop antibodies 14 days after infection, however in some mild cases it can take longer, or they may never develop antibodies at all. It is unknown whether this response is different in transplanted patients. How long these antibodies offer protection is unknown, but we know from other coronaviruses that protection offered from antibodies against the virus wanes over time. We also don’t know whether re-infection with COVID-19is possible and whether the disease is likely to be milder the second time round. All of this information is important when developing a vaccine.

You may be aware that a lot of effort is concentrated in developing a vaccine. Some of the ongoing trials are now starting to test the vaccine on human volunteers. We have no information about the progress of these vaccines so far and the most optimistic scenario suggests that a vaccine is approximately 6-12 months away from being made available. However, it is possible that it may take significantly longer or only have moderate effectiveness (offer some but not complete protection). It is also possible that an effective vaccine may never be developed.

What should I do if I think I have been in contact with someone with COVID-19?

If you have been in contact with someone who has a confirmed case of COVID-19, you should self-isolate, and let your clinical team know so that they can monitor you closely. If you start having symptoms call 111 and let your transplant team know.

Should I self-isolate or work from home?

Please see section What can I do to keep myself safe?

What should I do if I have a holiday planned? 

National guidance currently advises against all non-essential travel. As  a Lung Transplant patient you should be currently in self-isolation and therefore any form of travel is not advised.

For more information, please visit: https://www.gov.uk/guidance/travel-advice-novel-coronavirus

Should I send my child back to school?

The advice from PHE is that if a child or young person lives in a household with someone who is extremely clinically vulnerable (lung transplant patients are classified as extremely vulnerable), it is advised they only attend an education or childcare setting if stringent social distancing can be adhered to and, in the case of children, they are able to understand and follow those instructions. This may not be possible for very young children and older children without the capacity to follow the instructions on social distancing. If stringent social distancing cannot be followed, it is expected that those children should not attend. They should be supported to learn at home.

Further information on the advice of PHE can be found here.

As your transplant team we advise you to follow this guidance. However, we understand that these are extremely challenging circumstances and there may be pragmatic difficulties relating to childcare, home schooling, yours and your children’s physical and mental wellbeing. Please note that this guidance does not stop children from going to school if they can follow social distancing and practice good hygiene. At the same time it is important to remember that once your child goes back to school they will be in the same “social bubble” as classmates and their families, along with the inherent risk that this carries.

Every case is different so if you want more individualised advice and support please do get in touch with us.

Will I still be able to access my medicines/do I need to stockpile? 

We are working closely with our NHS partners e.g. Healthcare at Home, to make sure we continue to have enough supplies of medicines for our patients. If you are currently receiving medicines such as anti-rejection medication from Healthcare at Home, this will continue, however, at this time we are unable to enrol any new patients. The main change people may experience is that drivers may not ask for signature and may stay a safe distance away from patients by setting parcel down and then walking away and watching for recipient to pick up parcel. No medicines will be left unattended.

How you can help 

As usual, make sure you have enough ‘buffer stock’ by keeping at least two to four weeks’ worth of your medicines at all times (as advised by your clinical team), and requesting repeat prescriptions or homecare deliveries well in advance of this supply running out. That will give your pharmacy or homecare provider enough time to deal with any shortages should they arise.

It’s important to note that this is standard practice for our patients and not new advice.

If you are experiencing any difficulty getting hold of a supply of your medicines, or if you have any concerns about their availability, please let the pharmacy team know as soon as, please contact the team at Harefield Hospital: transplantpharmacy@rbht.nhs.uk


Tips for emotional wellbeing

We have put together some tips to support your emotional wellbeing during your period of self-isolation. We hope they provide you with some guidance.

During the pandemic, we will send you text messages that focus on your emotional wellbeing. If you are very distressed, please contact the transplant team for a referral to the psychological Medicine team, who will offer you telephone consultation. We are here to support you. 

Sleep hygiene tips

Sleep hygiene tip #1

Good sleep is important to your wellbeing. Try to set regular bed times and waking times. Make sure to begin preparing for sleep at least one hour before bed time. 

Make sure your bedroom is comfortable for sleep. Make sure the room is well-ventilated, that you will not be too hot/too cold. 

Think about how to relax at the end of your day.

Sleep hygiene tip #2

Try to avoid having caffeinated drinks after midday. It might also be beneficial to gradually reduce your overall caffeine across the whole day. 

Avoid using electronics such as your phone or laptop at least 1 hour before going to bed.

Try to avoid eating a 2-3 hours before bed time, as digestion can disrupt sleep.

Sleep hygiene tip #3

Consider keeping a sleep diary. Write down the times you go to sleep, wake up and if you woke up during the night. This will help you identify any behaviour patterns that might be unhelpful or disrupting your sleep. 

Aim to sleep for 7-9 hours every night. 

Sleep hygiene apps

Recommended apps that may help you with sleep hygiene:

  • Sleep better: tracks your sleep, looks at things that may be disrupting your sleep and tracks if you’ve had a good night’s sleep
  • Sleepio: advice from experts on good sleep patterns
  • Sleep Station: advice from experts on good sleep patterns

Self-care tips 

Self-care tip #1

Start a gratitude diary. Take time each day to write down something that you are grateful for e.g. positive interactions, acts of kindness, opportunities or something simple that you appreciate.

Catch up with a friend. Send a text message, call them or arrange a video call. They will appreciate your effort.

Self-care tip #2

Treat yourself to your favourite TV show, listen to your favourite song or buy yourself a small treat. 

Introduce a daily schedule to add structure to your day and help to make best use of your time. Set goals for yourself that you hope to achieve during this time e.g. learn a new skill or practice a skill you already have.

Self-care tip #3 

Take some time out for yourself and let go of your worries. Explore some useful ways to relax that works best for you and try to use them regularly into your routine. Explore how you can exercise while shielding. Climb your stairs, walk around your garden, use handheld weights.

Self-care tip #4

Eating well is important for your physical and emotional health. Prepare your favourite meal. You could also try to teach someone else how to create the meal, within your household or online. 

Self-care tip #5

There is a lot of information available about Covid-19. Take a social media/news break to avoid information overload. Make sure to engage in activities that you enjoy. Set a regular time slot for catching up on news and stick to reliable sources/media. If you have questions, contact the team at Harefield Hospital.

Self-care tip #6

Engage in an act of kindness. Examples include: message someone who is living alone, organise a care package for a vulnerable person or let someone know that you are willing to support them.

Apps to help with anxiety 

Recommended apps that may help you deal with anxiety:

  • Mindshift: an app that allows you to choose a specific area you are concerned with (e.g. sleep, worry, etc.) and then build a plan on how to manage it that works for you
  • Pacifica: an app that allows you to track your feelings each day and gives suggestions on how to help you with the issues you may be facing that day
  • SAM: this interactive anxiety toolkit allows you to create your own anxiety profile where you can try different techniques to reduce the anxiety
  • WellMind: this app was created by an NHS Trust and helps with stress, anxiety, depression and general wellbeing. There is also advice if you feel you may be in crisis
  • What’s up?: an app that helps you find the right emotional support for your difficulty
  • Beat Panic: overcome panic and anxiety, wherever you happen to be
  • Silvercloud: an 8-week course to help you manage stress, anxiety and depression at your own pace.

Grounding tips

Grounding tip #1

Play the “54321” game: name five things you can see in the room; four things you can feel; three things you can hear; two things you can smell (or two smells you like); one thing you can taste. It may be useful to go through the steps a few times. Try the technique in different situations to see how effective it can be.

Grounding tip #2

Play the category game: think of as many things from that category that that begin with a particular letter of the alphabet e.g. types of dogs, countries, songs, TV shows or famous people. Or, describe an everyday activity in great detail. For example, you could describe how you cook a meal, going through every step in detail.

Grounding tip #3

Eat something in a savouring way; fully experience the food; describe the sights, aromas, textures, flavours, and the experience in detail to yourself.

Think of favourites: think of your favourite colour, animal, season, food, time of day, TV show.

Remember the words to an inspiring song, quotation, or poem that makes you feel better.

Grounding tip #4

Say kind or positive self-statements to yourself. Imagine what you would say if you were speaking to your best friend. 

Think of things that you are looking forward to doing over the next week such as activities you have planned or a time you have arranged to speak to a friend or loved one. 

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