What is infection?

Infection occurs when germs such as bacteria, viruses or fungi enter your body and make you unwell. Everyone gets an infection from time to time. Many infections will only cause a mild illness in most people, but some can be more serious than others. Any area of the body can be affected by infection.

Are there different types of infection?

Yes, there are many different types of infection. The most common types of infections are bacterial, viral or fungal. Sometimes it’s difficult to know which type of germ is causing an

infection without tests such as swabs or blood samples being taken. This helps the medical team decide upon the best treatment to help you get better.

Common infections include

Coughs and colds
Sore throats
Tummy bugs
Ear infections
Infectious diseases like chicken pox
Other common childhood illnesses like slapped cheek syndrome or Scarlett fever.
Viral skin infections such as warts or verruca’s can be troublesome and difficult to treat.

How does the body get rid of an infection?

If a germ causes an infection, such as a common cold, the cells of your immune system fight it off and you get better.

The immune system is very powerful and complicated and is made up of many specialised cells including white blood cells and proteins called antibodies.

Antibodies are very important as they help the immune system recognise the germs which it has encountered before and to quickly remove them. Sometimes medications such as antibiotics are also used to help prevent infection or to help you get better quicker.

Why might infection be more of a problem for someone who has had a transplant?

Everyone who has had a heart or lung transplant needs to take immunosuppressant medications for the rest of their lives. The medicines work by making the immune system less powerful. This prevents it attacking the new heart or lungs and causing rejection. Unfortunately, it also makes the immune system less able to fight off infections.

Some infections like tummy bugs can cause problems such as difficulty keeping medicines down leading to low immunosuppression levels. Dehydration can also develop if you are not able to drink enough and this affects how the kidneys work.

Diarrhoea can also increase immunosuppression levels especially if you are taking Tacrolimus immunosuppression, so it is very important to contact your transplant team for advice if you have two or more episodes of diarrhoea or vomiting in 24 hours. They will advise what action you should take and whether extra blood tests may be necessary.

Uncommon infections can sometimes be a problem for people taking immunosuppressant medications. Your transplant team will be aware of this and will do the appropriate tests to identify what is making you unwell.

Sometimes infections don’t always show in the usual way which is why it’s important to contact your transplant team if you are not well or if you feel that you are not getting better.

What does infection feel like?

The symptoms you may experience with an infection or if your body tries to reject your transplanted heart or lungs may feel very similar.

It is important to let your parents or carer know when you feel unwell or not your usual self, even if you do not want to or worry about telling them. They can talk to your transplant team who will then decide what action needs to be taken. The way you will feel if you have an infection depends upon which area of the body is affected and how bad it is. Most people feel generally unwell when they start to develop an infection.

Symptoms vary depending on the type of infection you have but may include

Feeling unwell, lethargic or more tired than normal
Feeling hot and shivery or cold
Having a headache
Having a poor appetite
Tummy upset such as vomiting, diarrhoea or tummy ache
Feeling breathless or having a cough
Having a rash
Having a high temperature

When might infection happen?

Infections tend to be more common when immunosuppressant medication dosages are at their highest but can happen at any time.

This is often during the first year after transplant or during treatment for rejection. It can also take longer than normal for infections to clear up. Infection can be commoner during the winter months when there are more coughs and colds circulating.

Babies and young children may catch more infections than older people when their immune systems are just in the process of developing. Infections can also be more common when children first start attending nursery or school.

How is infection diagnosed?

Your medical team will consider the symptoms you have and perform the tests needed to find out why you are unwell.

It is very useful to have a thermometer at home so your temperature can be taken. Tympanic (ear) or digital thermometers are most accurate, whilst forehead chemical thermometers shouldn’t be used as they are unreliable. Most children have a normal temperature of around 36.5 degrees centigrade although this can vary slightly.

If you feel unwell

Record your temperature. You and your parents will have been shown how to take your temperature at the hospital but if unsure follow the instructions on your thermometer packaging.
If your temperature is 37.5 degrees centigrade or above, record again an hour later.
If your temperature is the same or higher, take paracetamol and ring your transplant team for advice on the numbers at the end of this leaflet or seek advice from your local medical team particularly if you have other symptoms too.
Paracetamol is safe to take but products containing ibuprofen such as Nurofen or Calprofen should not be taken. Some of the essential medications that you need to take after a transplant can impact upon your kidneys so it is important to avoid medicines like ibuprofen as much as possible.

Can infection be treated?

Some infections don’t need any treatment and will clear up on their own. There are others that will need treatments such as antibiotics.

Sometimes treatment can just be given at home but you may need to be monitored in hospital depending upon how unwell you are or to find out what is making you poorly.

Please let your transplant team know before you start any new medicine or treatment so medication interactions can be avoided.

How can I help stop infection happening?

For 12 weeks after your transplant avoid crowded enclosed areas such as shops as this increases the risk of picking up infections during a vulnerable period when immunosuppression doses are at their highest.

This is why hospital visitors are limited when you first have your transplant. Your transplant team will advise you when you may return to school, resume normal activities and begin mixing with family and friends again.

Medications

You will be taking medications that help prevent some types of infection during the first few months after your transplant. Some children need to continue preventive medications such as low dose antibiotics or antibody therapy if they get a lot of infections, but your transplant team will advise you about this.

Childhood vaccinations

Childhood vaccinations are important to prevent disease. The majority are safe to have with the exception of live vaccines. If offered a vaccine, please check with your transplant team to ensure it’s suitable for you. We would recommend you have an annual influenza vaccine; this must be in injection form rather than the nasal spray. We would also recommend that you follow the covid vaccine schedule. Other household members and family pets should have their routine vaccinations too. As people who are taking immunosuppressant medication don’t always maintain immunity, extra vaccine boosters may be necessary from time to time.

Avoid people with obvious infections

If possible, avoid people with obvious infections such as coughs, colds, tummy bugs, chickenpox and ask people who are unwell to stay away if practical. Sometimes this is very difficult especially if living in the same household with someone who is unwell. They can still help for example by sneezing into a tissue, putting it straight in the bin and washing their hands.

There are some simple things you can do which reduce your risk of picking up infections.

Regular handwashing with soap and water can help particularly before eating, after petting animals or after going to the toilet. Alcohol hand gels are useful but don’t kill all bugs so using soap and water is best for hand washing where possible.
Take meticulous care of central venous catheters, wounds and performing twice daily routine oral care are important ways to prevent bacterial infections.
Sexually active young people should also be mindful of sexually transmitted infections and take appropriate precautions.

What precautions are needed about food?

Making sure your food is thoroughly cooked and stored properly is important and helps reduce the risk of developing food poisoning.

Takeaways are not allowed initially after transplant or whilst having treatment for rejection. Your transplant team will advise when it’s safe for you to have takeaways.

Eating out and socialising are enjoyable activities which you may partake of with your family and friends. Most establishments have a hygiene rating displayed so eating somewhere that has a good hygiene record is sensible. Burger vans are to be avoided.

Some foods can carry more risks than others such as:

Unpasteurised products
Undercooked meat
Salad bars
Mr Whippy type ice cream
Eggs that don’t have the British Lion mark or aren’t produced under the Laid in Britain egg assurance scheme.
Reheating foods such as rice is also best avoided as this can be a potential source of infection.
Always follow the manufacturers storage instructions and use by date. Your transplant team will advise you further about food and any dietary requirements specific to you.

Can I travel?

Hygiene standards vary in different environments and from country to country. For example, tap water is safe to drink in the UK but may not be in other countries. If you are planning on taking a holiday abroad, please discuss this with your transplant team before booking as there might be specific advice to consider or additional vaccines that are recommended. You should not holiday abroad within your first year after your transplant.

If you would like to discuss infection in more detail or have any questions, please contact a member of the transplant nurse specialist team on the numbers below or ask a member of the team at your next hospital appointment.

Resources:

Contact

For further information, contact the transplant nurse specialists.

Office hours: Monday to Friday, 9am to 5pm

[email protected]

Contact out-of-hours

Outside of these times please ring ward 23 if you have an urgent query affecting your child’s transplant health.

0191 213 7023

Further information

PALS (Patient Advice and Liaison Service) for help, advice, and information about NHS services. You can contact them on Freephone 0800 032 02 02, email [email protected]