Recovery after a stem cell transplant

Follow up and care when you go home

You need regular follow up appointments after your transplant. These may be weekly to begin with. They gradually become less frequent. These appointments are to:

• keep an eye on your general recovery and any side effects you may have

• check your blood cell levels

• find out how well the treatment has worked

It’s likely that you will get at least one infection after your transplant. You might need to stay in hospital again. This can be quite upsetting for you if you haven’t been home for long.

Your central line

The doctor or nurse might remove your central line before you go home. But you may need to keep the central line in if you still need platelet or blood transfusions. You might keep it until your blood counts improve. Your nurse can also use it for blood tests at your follow up appointments.

Blood products

You might still need to have blood or platelet transfusions after you go home. During the first few months you are at risk of having a reaction to blood transfusions. To prevent this, any blood or platelets you have must be irradiated. This means they have been treated with radiation. This destroys any white cells that could cause the reaction.

Your nurse will give you a card to carry with you. This tells doctors that any blood you need in an emergency should be irradiated. Your doctor or nurse will tell you how long you need to carry this card for. It’s usually for about a year.

Reducing your risk of infection

After a transplant, it takes time for your blood cell levels to recover and for your immune system to work properly again. During this recovery period you are at a higher risk of infections.

Your doctor and nurse will talk to you about what you can do to lower your risk of getting an infection.

Medicines to prevent infection

You need to take medicines to prevent infections for the time you are in hospital, and when you go home. Check with your healthcare team when you should stop taking these. Don’t stop taking medicine to prevent infection without checking with your doctor. When you are fully recovered from your transplant you may need to have vaccinations against certain infections.

Eating and drinking

During your time in hospital, you're usually told to avoid foods that are known to increase the risk of stomach or bowel infections. Your doctor or nurse will let you know when you can start eating normally again. The advice can vary slightly between hospitals. But some general advice during your recovery is to:

• wash your hands before cooking and eating

• cook food thoroughly

• avoid raw or undercooked eggs and shellfish

• avoid soft cheese such as feta cheese, and blue cheese such as stilton

• avoid desserts and cakes containing cream

• wash all salad and fruit thoroughly

• avoid takeaways and fast food restaurants (or make sure they make you freshly cooked food)

Don't drink more than the recommended amount of alcohol. Ask your doctor if alcohol interferes with any medicines you are taking.

You have probably lost weight during your treatment, but you should gradually put it back on and start to feel stronger. Talk to your doctor or nurse if you are worried about your weight. They may be able to arrange for you to see a dietitian for specialist advice.

Going out

During your first few weeks at home, you can help reduce infection risk by:

• avoiding crowded places, such as cinemas, restaurants and public transport

• avoiding anyone who has come into contact with an infectious disease such as chickenpox or flu

Once your white cell count recovers, you can go out normally again. Ask about this at your appointments. You don’t want to avoid socialising unless you have to, and it’s easy for your doctor or nurse to forget to tell you when you can relax these restrictions.

Feeling very tired (fatigue)

It may be several months before you really feel you have got your strength back. Feeling extremely tired is normal to begin with and affects some people more than others.

Take things slowly when you get home. You will need to get plenty of rest. You can talk to your doctor or nurse about it. They might suggest ways you can improve your energy levels.

Read more about managing tiredness (fatigue)

College, university or work

You won’t be able to go back to your usual daily life until your blood tests are at a safe level. It's a good idea to start part time until you have got some of your strength back. Talk to your employer, teacher or tutor about this.

You might be able to go back to work or studying at home first.

You might also want to think about whether you would like them to talk to your colleagues or peers about your illness and treatment. Or you might prefer to talk to them yourself.

Sport and physical activity

Physical activity is a great way to help you feel better, both physically and emotionally. It can help to reduce tiredness (fatigue) after treatment. How much you can do will depend on how fit you are and how you feel. You will probably have days when you don’t have so much energy. Listen to your body and build up slowly.

Gentle walking is suitable for most people to start with. If you don't have a central line, you can do most contact sports and swimming once your blood counts are back to normal and you feel up to it.

If you have a portacath, you can usually go swimming once the stitches have healed. But it’s important to check with your doctor first, as there may be an infection risk from using a public pool.

Holidays and travel

Before you go

Speak to your doctor before booking a holiday. Most people can go away but to begin with it’s best to stay in the UK. You can’t travel by plane if your platelets are too low.

Whenever you go away from the hospital that treated you it is helpful to carry a doctor's letter with you. This gives a summary of the treatment you have had and any medicines you are taking. It includes a contact phone number for emergencies.

After the first year, you can go where you like. But you need to avoid having some vaccinations. And following an allogenic transplant Open a glossary item, you should not have live vaccinations.

Find out more about travel vaccinations

Travel insurance

It's important to arrange travel insurance if you want to travel abroad. It’s there to help you get compensation for anything that might go wrong with your travel. Its also there if you need to claim back compensation for any medical treatment you have while you are in another country.

Getting travel insurance when you have or have had cancer can be difficult and expensive. This is because insurance companies only make money from people who don't claim. Because you’ve been ill, they think you’re more likely to claim. For example, you might need to cancel your trip or have medical treatment abroad. This makes you a bigger risk to the company. So they might:

• refuse to give you travel insurance

• give you travel insurance, but it’s likely to be very expensive

If a company agrees to insure you, they will almost certainly ask for a letter from your consultant about your fitness to travel. As the time since your treatment increases, you will find getting travel insurance easier.

You may also be able to get a free Global Health Insurance Card (GHIC) if you are travelling in Europe. You can apply for this online on the NHS website.

Find out more about getting travel insurance and how to get a GHIC

Your sex life

A transplant doesn't physically stop you from having your normal sex life. But you might find that your sex drive and self esteem are low for a while. This may be due to:

• the treatment

• lack of strength and energy

• worry about the future

• feeling upset about losing your fertility

• lack of confidence after the changes in your appearance that a transplant causes at first (for example, hair loss)

• getting used to changes in sex hormone levels

Some of these effects take time to get used to. Some will get better on their own. For example, your hair will grow back and you will put on weight.

It is important to give yourself time to recover. It can also help to keep talking to your partner, if you have one, about how you are both feeling.

You can always talk to your nurse or doctor if you are having any problems with your sex life. They can help you get the support and advice you may need.

Your feelings

You’ve been through a lot and it can take time to get back to a new sense of normal. It can be difficult to get back to work and family life. You may feel frustrated that you don’t feel as well as you hoped as quickly as you would like. There may be set backs along the way, and you may be in and out of hospital for a while.

After going through such intensive treatment some people may feel a new enthusiasm for life and appreciate the simple things. Other people may find it difficult to cope with and make sense of what they have been through. Some people may have anxiety or depression.

It’s important to talk things through with people around you or your doctors or nurses. They can help you get more help if you need it. Many people find it helpful to have counselling.

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