Physical side effects during recovery

Why might I get physical side effects?

In the time after you’ve left hospital, but still during the early stages of recovery, you might get physical side effects caused by:

• changes in your medication
• how well your new immune system is developing
• graft versus host disease (GvHD).

Although your transplant team offers you treatment and support throughout recovery, knowing more about the symptoms will allow you to get help as soon as possible.

Reading about these might feel overwhelming if you’re just starting to recover, but remember these are potential side effects. You might experience all of these, a few of these, or none at all.

When might I experience these side effects?

You’re most likely to experience the side effects discussed on this page after you’ve left hospital during the first weeks or months of recovery.

The side effects we cover on this page are different to:

• Late effects of transplant that might happen years later. For more information, see our page about the late effects of transplant.
• Early side effects that might happen really soon after your transplant, most likely when you’re still in hospital. For more information, see our page about early side effects.

Sickness, diarrhoea and weight loss

If you experience side effects like nausea, sickness or diarrhoea during recovery, it could mean you aren’t getting enough nutrition from your food.

For some of us, these symptoms improve a few weeks into recovery. Other people might have to deal with them for longer. After a while, these side effects can:

• lead to weight loss
• make you feel more fatigued
• affect your long-term recovery.

You’ll have plenty of options to help you control these problems, including medication or changes to your diet and eating behaviours. Your medical team will discuss these with you.

Aches and pains

Many people will have to deal with a certain level of pain during recovery from a stem cell transplant. You might feel pain in different parts of your body, such as your nerves, bones, joints and other organs.

While coping with pain can of course feel physically draining, you might also find it emotionally challenging. As this could slow down your overall recovery, it’s important to immediately report any pain to your medical team.

They can offer to:

• Give you different medications for pain relief treatment, like ibuprofen, paracetamol or co-codomal.
• Discuss other techniques with you, like meditation or mindfulness, so that you feel more able to mentally cope with your situation. For more information about mindfulness, visit the Mind website.

If your pain becomes more intense, your doctors might refer you to a palliative care team. Remember, this does not necessarily mean end-of-life care – a referral doesn’t mean your transplant is failing. Palliative specialists are experts in managing pain and will be able to make you feel more comfortable.

Bleeding and bruising

In the first few weeks and months of recovery, you might experience new bruising or bleeding, including frequent nosebleeds or blood in your pee or poo. You should tell your medical team so they can investigate right away.

While there are many possible reasons for bleeding, one of the most common is a low platelet count. Platelets are a type of blood cell which help with clotting. If it’s harder for your blood to clot – which you might hear called ‘thrombocytopenia’ – your hospital can arrange a platelet transfusion for you. This treatment is very similar to a blood transfusion.

Weak joints and muscles

After your stem cell transplant, the combination of different early side effects will probably leave you feeling very physically week. As you move into recovery, you might continue to feel like this because:

• You are likely to have lost some of your muscle strength after your time spent in hospital.
• Any long-term steroid treatments, such as for GvHD, can cause your muscles to get weaker.

With regular physiotherapy and light exercise, like walking or yoga, you can rebuild your strength, stamina and balance. It’s important to set small goals and build up your physical activity –  find out more on our page about taking control of your recovery.

In the video below, people share their experiences of exercise after a stem cell transplant.

Nerve damage and numbness

You might experience numbness or tingly sensations in your hands and feet, also called ‘peripheral neuropathy’. This might happen because of nerve damage caused by the chemotherapy given during conditioning therapy.

This side effect can make tasks like walking or exercising more difficult during recovery, but usually improves over time. Having some physiotherapy sessions will also help.

For more information on peripheral neuropathy, visit the Macmillan website.

Kidney problems

As people commonly experience mild kidney problems after a stem cell transplant, your medical team will test your kidney function in your hospital check-ups.

Your kidneys normally filter out waste from your blood which then leaves the body through your pee. They also help to keep the balance of important substances in your body, like salt and water.

Kidney problems during recovery after transplant can be caused by:

• your medication
• an infection
• simple dehydration.

Doctors may need to change your medication or put you on a drip to give you extra fluids.

Liver problems

Your medical team will regularly check your liver function after your stem cell transplant. The most common liver problem is ‘hepatic veno-occlusive disease’ (VOD), also known as ‘sinusoidal obstruction syndrome’ (SOS). You’re most likely to experience this side effect in the first few weeks after your transplant.

VOD/SOS is caused by types of conditioning therapy that damage the cells of your liver. This means people who have had high doses of chemotherapy have a higher risk of developing VOD/SOS.

In terms of symptoms during recovery from transplant, it might cause:

• pain and swelling around your stomach area
• jaundice, which is when your skin looks yellow
• sickness
• fatigue.

These symptoms are often mild and disappear quickly, so you might not even know you have VOD/SOS. For other people, things could get worse – talk to your medical team if you notice any new symptoms.

Thrombotic thrombocytopenic purpura (TTP)

Thrombotic thrombocytopenic purpura (TTP) is a rare side effect after stem cell transplant that affects about 1 in 20 people. It causes small clots to form in your blood following your transplant. This means fewer platelets can do their normal job of helping your blood to clot after any cuts or injuries.

In terms of symptoms, TTP can:

• cause fever or headaches
• cause you to bruise easily.

Researchers have found a link between TTP and certain medications, so your medical team may need to review the medications you’re taking.

For more information about TTP, visit the NHS website.

Issues with sex

As part of the physical side effects of your stem cell transplant, you might find that having sex feels uncomfortable or even painful. You might experience this during recovery because of other physical side effects, like muscle pain, nerve damage and bruising. Or it might relate to having these physical side effects on your sex organs themselves, including genital GvHD.

Many people also have concerns about how their body has changed, which in turn affects their confidence when it comes to sex. As part of the late effects of transplant, you might also experience problems with your sex glands.

For more information, support and advice, see our page on sex after a stem cell transplant.