What is rejection?

Rejection is a natural process controlled by your immune system. Your immune system protects you by removing anything that it recognises was not part of your body from birth. Rejection can happen to anyone who has had a transplant.

The immune system is very powerful and complicated and is made up of many special cells and proteins called antibodies. Their job is to search for things that shouldn’t be there, such as bacteria, viruses and cancer cells and to destroy them. It works by recognising that these things are not a normal part of your body and it then tries to get rid of them.

Your immune system is usually very good for you because if a germ causes an infection to develop, your body can fight it off to get better.

Unfortunately, your immune system can’t tell the difference between a germ and a transplanted organ. After a transplant the body tries to fight off the new transplanted organ and this is called rejection.

Are there different types of rejection?

Yes, there are three different types of rejection.

Cellular mediated rejection (CMR)

Happens when your body’s special cells try to get rid of the new lungs. It is most likely to happen within the first year of having your transplant but can happen after this too. This is why you have more blood tests and hospital check- ups during the first year after your transplant. CMR can be treated in hospital with high doses of steroids which are given into your vein. Sometimes other treatments such as medication changes are also needed.

Antibody mediated rejection (AMR)

Caused by proteins called antibodies which recognise the different antibodies in your lungs and try to destroy them. This type of rejection can happen at any time after your transplant. AMR can also be treated but may need different combinations of medicines. Sometimes we use a treatment to wash the antibodies out of your bloodstream then give medicines to try to stop them coming back.

Chronic rejection

Can happen months or years after your transplant. It is also known as obliterative bronchiolitis (OB or BOS). This type of chronic rejection affects the small airways of the lungs.

These small airways can become blocked by scar tissue leading to the lungs not functioning as well; leading to potential shortness of breath and reduction in lung function. These changes in the lungs may occur before you are aware of any symptoms and can cause progressive and irreversible damage to the lungs.

This is why your lung function is checked regularly, and it is essential that this is monitored even when you are feeling well. Any changes in how much exercise you can do are also important. It is very important that you, your carers or your local team let your transplant team know about any changes, on the numbers at the end of this leaflet.

What does rejection feel like?

Most people feel generally unwell when they start to develop rejection although sometimes you may not notice any symptoms at all.

This is why it’s very important to come for your check-ups, to have your regular blood tests and to let us know if you’re not well. If you are developing rejection, you may feel more tired than usual and may have a slight temperature.

In many cases it can feel like having flu. Rejection can make you very ill and you could even die if you don’t start treatment as soon as possible. Rejection usually comes on gradually over a few days, but it can happen very quickly.

You may experience

Feeling lethargic or more tired than normal
Unexplained reduction in how much exercise you can do
Flu-like symptoms
Feeling breathless or having difficulty breathing
Palpitations or feeling your heartbeat is faster or more irregular than normal
Mild fever
Reduction in your lung function readings of 10% or more
Cough and/or increased sputum production

The symptoms of rejection can be very similar to when you have an infection. This is why it’s really important to let your parents or carer know when you feel unwell even if you do not want to or worry about telling them. It is also very important to let the Transplant Team know.

What tests might the transplant doctors need to do?

The common tests you may need include

Physical examination and to ask you about your symptoms
Blood tests to look for signs of infection or to find out whether there are any antibodies in your bloodstream
Lung function tests to check for a decline in the function
A chest X-ray (CXR) to look for changes in your lungs or signs of infection
A CT scan to look for abnormal changes in your lungs
A bronchoscopy may be needed, this is a procedure where the doctors look at your airways, it allows small samples (biopsy) to be taken which are checked under a microscope in the laboratory to look for rejection or for samples to be taken to look for germs; this is called a bronchoalveolar lavage (BAL). A biopsy may be needed to check whether you have rejection or to confirm that rejection has been successfully treated. Most children have this done whilst asleep under general anaesthetic, but most adults have it done with sedation.

Can rejection be treated?

Acute rejection can be treated, and it is much better to treat it early before it makes you very unwell. This is why you should tell your parents or carers if you don’t feel well, and they can speak to your transplant team.

Powerful medicines are available to treat rejection and usually they work quickly. In antibody mediated rejection we sometimes use a treatment to wash the antibodies out of your bloodstream then give medicines to try to stop them coming back. Most children soon feel better once they are treated.

Chronic rejection or OB cannot be cured but can be treated and controlled. Treatment can be difficult but there are several treatments which may be considered.

Alternate or additional immunosuppressive medications may slow down the process.
Total Lymphoid Irradiation (TLI) is a form of high-energy x-ray treatment which cause a biological effect to reduce the number of white blood cells and make the immune system less effective.
Extra Corporeal Photophoresis (ECP) is a form of treatment that is sometimes used, it involves a dialysis-type central line and blood is then treated and returned to the body, a bit like someone having dialysis

How can I help stop rejection happening?

The medicines you take every day help prevent rejection and are vitally important. They work by making your immune system less efficient so it can’t try to attack your new lungs.
The most common medicines used are ciclosporin, tacrolimus, mycophenolate mofetil (MMF), mycophenolic acid, azathioprine, prednisolone, and sirolimus.
You will be taking at least one of these medicines and you may be on more than one.
If you stop taking your medicines, this will cause rejection to develop. The rejection may not happen straight away, but it will happen at some point. If it’s not treated quickly, you will become seriously ill and might die.
You can help prevent rejection by taking your medicines at the correct times and taking the correct dosages
Don’t skip doses or take them late as this will affect the amount of medicine in your blood stream
Illnesses such as diarrhoea and vomiting can affect the amount of medicine your body absorbs. If you’re unwell, we need to know in case we need to adapt your medications to prevent rejection happening.
Some medicines including over the counter medicines and herbal remedies, can also affect the amount of immunosuppression in your body. Please always check with us before you start taking something new.
Grapefruit also affects your immunosuppression levels, and you shouldn’t eat or drink anything which contains grapefruit

Can rejection happen even if I take my medicines?

Rejection is less likely to develop if you take the correct amount of your medicines at the right times. It can still happen though, which is why you need to know what rejection might feel like and you should have your regular blood tests and check-ups.

If the medicine slows down the immune system, why do I not get more infections?

The amount of the medicines that you are taking is changed by your transplant doctors depending upon your blood test results. It is a balancing act – too little medicine and you will get fewer infections, but you might develop rejection; too much medicine and you are less likely to develop rejection, but you might get lots of infections. This is why we try really hard to prescribe the right amount of immunosuppression for you and why your blood tests are so important.

Summary

Rejection happens when your immune system tries to fight off your transplanted lungs.
- The medicines you take will help stop rejection from happening.
- Rejection can feel a bit like having flu.
- Acute rejection can be treated. If you feel unwell tell your parents or carers straight away so they can talk to us about it immediately.

Who should I contact if I have questions about rejection?

If you have any questions about rejection or if you have concerns about the information in this leaflet, please chat to a member of your transplant team.

Please don’t hesitate to talk to a member of staff at your next clinic appointment, or you can call the children’s transplant nurse specialists on the numbers at the end of this leaflet.

Contact

Outside of these times please ring ward 23.

0191 213 7023

If you have symptoms of rejection, please contact us urgently or attend your local emergency department.

Resources

NHS Blood and Transplant

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]