Dealing with infections

A neutrophil is a specific type of white blood cell that fights infection. Your neutrophil numbers can drop very low after your transplant. If you get an infection that your body cannot fight during this period, this is called ‘neutropenic sepsis’. This can develop very quickly and can be life-threatening, so it’s important that you are vigilant for signs of infection.

PCP is a fungus that causes pneumonia. People who have had a stem cell transplant and are on immunosuppression are at a higher risk of developing it. You will need to be put on preventative medication to be protected against this. This can be either as a regular inhalation or oral tablet. Symptoms can include a cough, difficulty breathing, high temperature and chest pain which gets worse when breathing or coughing. A diagnosis will involve a chest x-ray and sputum (spit) samples.

These are common viruses that 60-90 % of the general population will have been exposed to by the time they reach adulthood. After the initial infection, these viruses remain dormant (asleep) and cause no symptoms or illness. Because people who have had a stem cell transplant have a suppressed immune system, these viruses can activate (wake up) and may need to be treated.

You’ll be regularly monitored for these viruses after transplant via routine blood samples. If a virus is detected, your team will discuss with you what treatment you need. It’s important to know that you might not feel unwell or have any symptoms before it is detected by a blood test. In many cases, it is still important to treat you at this stage, even if you feel well. This is to prevent the viruses causing very severe infection.

Shingles can occur when the virus that causes chickenpox ‘reactivates’. Like CMV, EBV, and adenovirus, once you have experienced chickenpox, the virus remains dormant in your body forever. When you are healthy, your immune system manages to stop the virus reactivating. However, when recovering from a stem cell transplant with a suppressed immune system, the risk of the developing shingles increases.

You will be on preventative medication to reduce the chance of shingles developing but you must avoid being around anyone with shingles or chickenpox until your immune system has completely recovered. If you think you might have been exposed to anyone with shingles or chickenpox, even if you have no symptoms, please let a member of your transplant team know straight away. They will take some more details from you and decide whether you need any other preventative medication.

Shingles can occur anywhere on the body. Symptoms include:

• burning pain and itchiness on your skin
• red raised lesions or blisters, which develop in a line as they usually follow the path of a nerve.

If you think you could be developing symptoms, please let a member of your transplant team know immediately. Do not touch or scratch the blisters and do not apply any creams.

If you do develop shingles, it can be very contagious if anyone comes in direct contact with the skin rash. You should therefore avoid other people with suppressed immune systems, as well as anyone who is pregnant, as they are all at a higher risk of getting severe infections.

Developing a respiratory or chest infection is very common after stem cell transplant, especially in winter.

The cause and treatment can vary so it’s important that you tell someone if you have any symptoms such as a dry, wet, or painful cough or shortness of breath. Even if you feel fine when you sit but experience unusual shortness of breath when you walk small distances, you should let your transplant team know. A small change can be a sign that a chest infection is developing so it is better to start treatment early. Chest infections that are not treated can quickly develop into more serious lung infections.

If you go to the outpatient department for a suspected chest infection, tell the reception staff immediately as they might decide to take you straight to a single room. This is to prevent the spread of infections to other patients.

A central line is normally fitted shortly before your chemotherapy is due to start or before your admission for transplant. It’s a thin tube that goes through the skin near your collarbone and into the large vein that leads into your heart (also called a Hickman line).

Alternatively, you may have a peripherally inserted central catheter (PICC) line in your upper arm in to one of the main veins either in your arm or chest. Both lines enable the nurses and doctors to take blood samples, deliver the stem cells and treat you without using a needle every time.

Although it is safe to have a CVC, there can be a risk of causing infection and you should be aware of signs of infection such as redness, pain, discharge from the site, a temperature and rigors (uncontrolled shivering). A CVC line can carry an infection even without these symptoms so if you have a temperature alone, the CVC site will be swabbed, and the swab sent to the laboratory. If you do develop an infection in your CVC line, treatment can include antibiotics and sometimes the CVC will be removed.

CVC infections can develop very quickly so it’s important that you contact a member of your team immediately if you have any concerns.

You will take preventative medications to protect you from viral and fungal infections as soon as you are admitted to hospital for your transplant. Ask your team to explain what these drugs are so you understand what they are for. It’s important that you take these medications. If you are struggling to take them, you must let your transplant team know so they can try different ways to protect you.

Be aware of how to keep your Hickman/central/PICC line clean and when it needs to be flushed by a nurse. You will know more than anyone when it was last cleaned, and when dressings were changed.

It can be difficult to know as a family member or friend what you need to do to lower the risk of infections. The best advice is to take a common sense approach. Always wash your hands and always say if you are not feeling well or have been in close contact with someone who is unwell. If you have children or grandchildren, it should be fine for them to be around the person who has had the transplant if they are well.

If you have any concerns at all, speak to the transplant team and they will advise you on what action to take. It’s a balance of keeping people safe while they recover and not limiting them from spending time with people they love. Most of the precautions below should also be followed by family and friends to reduce the risk of infections.

• Always wash your hands using hot water and soap or alcohol-based hand gel. Dry your hands thoroughly, particularly before eating and after going to the bathroom.
• Avoid being near anyone who has a cough, cold, is being sick or has diarrhoea. If you do come into contact with anyone with these symptoms, wash your hands straight away.
• Have a digital thermometer at home that you can use to check your temperature. Taking it at roughly the same time every day will help you know what is normal for you and you will then be able to recognise if it changes.
• If you think you might have an infection when attending an outpatient appointment, please let the receptionist know as they might decide to take you straight to a single room to isolate you. This is to prevent the spread of infections to other patients.
• Wash your hands after you have been in contact with pets or animals, and avoid handling their poo. You can happily give that job to somebody else!
• Avoid handling any garden/pond waste.
• As much as possible, try to minimise contact with large crowds and travelling on public transport.
• Always practise safe sex to reduce the risk of sexually transmitted diseases.
• Make sure that your family or those that you live with are up to date with their vaccinations. For example, family members in close contact with you should receive the flu vaccine.

• Follow good food hygiene practice.
• Make sure all food is cooked properly and avoid eating meat that is served rare, shellfish, raw or undercooked eggs, and blue cheeses.
• Wash any fruit and vegetables under running water before eating.
• Keep food refrigerated and do not leave food out of the fridge for long periods.
• Defrost food in the fridge, not at room temperature.
• Do not re-heat food more than once.
• Only eat in restaurants with freshly prepared food. Avoid food that has been left out on display including from salad bars and buffets.
• Try and drink at least two litres of water a day.

Although you should avoid foods that cause infection, it’s important that you maintain your weight and keep hydrated to keep strong in case you develop an infection. Loss of appetite is common after transplant. If you struggle to follow the dietary advice given for after your transplant, speak to your dietician who can give you alternatives.

All vaccinations, including from childhood and COVID-19, will no longer protect you after you’ve had a stem cell transplant. It’s recommended that these vaccinations are repeated to protect you from preventable infections.

Your transplant team will guide you as to when this should start but it will generally depend on how well your blood counts are recovering, how much immunosuppression you are on, and if you are free from infections. In most cases, your GP will be asked to give you the vaccinations.

The vaccinations will be given in several stages. The first vaccines may be started as early as three to six months after your transplant, depending on the factors listed above. They will include inactive vaccinations, which are safe to have even if your immune system is still recovering. Live vaccines may be given from around two years after transplant, if your white cell counts have recovered and if you are no longer on any medication to suppress your immune system.

Ask your transplant team for a copy of the vaccination schedule so you know what to expect. It can take time to complete all the vaccinations so please don’t be concerned, it’s completely normal. Until you have completed the vaccinations, you should avoid anyone known to have an infectious disease.