Hospital visits during recovery

Why do I need to keep going to hospital?

In the weeks, months and years after your stem cell transplant, you need to go to hospital so your medical team can check on you. They want to:

• make sure your new immune system is working properly
• and monitor any physical side effects,including late effects after transplant.

As time goes on, you’ll go to hospital appointments less and less. Eventually, you’ll only need to go for a check-up once a year to make sure everything is still OK.

Early stages of recovery

When you first leave hospital after your stem cell transplant, you will have check-ups with your medical team once or twice a week. They will do things like:

• assess your general health and how you’re feeling
• look for signs of infections or graft versus host disease (GvHD)
• check on other side effects and possibly adjust your medication
• test your blood to count your blood cells
• check your liver and kidney function
• flush and clean your central venous catheter (also called your ‘central line’)
• answer any questions or concerns you might have.

Why might I need a blood transfusion?

If your blood cell or platelet counts are low, your medical team may decide to give you a blood transfusion. They might even give you more than one.

Blood transfusions are more likely during your early stages of recovery.

However, depending on the blood cancer or blood disorder you had, you may need to have ‘irradiated blood’. This means donors give blood which doctors then treat with radiation to:

• remove white blood cells
• reduce the chance of you having a reaction to it.

If you need this type of blood, your medical team will give you a card to carry with you in case you end up in a different hospital in an emergency.

For more information about blood transfusions, visit the Lymphoma Action website.

Further into recovery

You’ll still have regular check-ups at hospital further into your recovery. If things are going fairly smoothly, you’ll visit hospital less often than during early recovery.

At three months and at one year after your transplant, the hospital may invite you to either or both of these appointments:

• a bone marrow test where doctors take and analyse a small sample of bone marrow
• a PET-CT scan of your body.

Doctors use these tests to monitor your progress and confirm that your blood cancer or blood disorder hasn’t returned. You can find out more about bone marrow tests on the Macmillan website and more about PET-CT scans on the Cancer Research UK website.

Even further into recovery, some people might also need to visit hospital for either or both of these reasons:

• Central line removal – As your central line can cause infection, your medical team will remove it as soon as it’s no longer needed. Normally they’ll remove it a few months after transplant. This procedure normally takes place at the outpatient clinic using a local anaesthetic, so you won’t feel anything. You may need a couple of stitches to help the wound heal. 
• Hospital stays – Unfortunately, many people have setbacks during recovery and may need to spend time in hospital again. The most common reason is infection – it’s so easy to pick one up while your immune system is rebuilding. However, this doesn’t mean your transplant hasn’t worked – it’s a natural part of recovery that you can’t always avoid.

Longer-term appointments

No matter how much time has passed since your stem cell transplant, you'll always have a point of contact in hospital. Normally, this will be your clinical nurse specialist (CNS) or transplant coordinator.

Every year on from your transplant, you’ll have a full health assessment. Your medical team will keep an eye on whether you’re experiencing any late effects after transplant.

Getting vaccines

Having a stem cell transplant means your immune system has been totally replaced. After your transplant, the vaccines you had as a child will no longer work.

Your transplant team and GP will schedule and give your new vaccines to you. You might get some vaccines at least six months after transplant, but might need to wait at least two years for others.

Your family or the people you live with should also consider having the seasonal flu vaccine every year, which they should be able to get at their GP or local pharmacy. They might also want to consider getting regular COVID-19 boosters – for more information, see our page on coronavirus and your treatment.

Generally speaking, you cannot have any vaccines based on a live virus or bacteria – these are not suitable for people with a potentially weakened immune system. This means you cannot usually get the standard childhood vaccines for:

• tuberculosis (TB)
• measles, mumps and rubella (MMR).

However, some years after your transplant, your doctors might recommend you get these anyway because their benefit can outweigh their risk.

You can also find information about travel vaccines on our page about travelling abroad.

Other appointments

At any point in your recovery, even years later, you might need to go to hospital for more specific treatments or procedures. Your medical team will try to arrange these appointments alongside your regular visits to make things more convenient for you.

Some of these appointments will feel like important milestones in your recovery, showing that you’re making good progress. But if problems develop at any point in your recovery, you might need to go back to hospital for reasons like:

Specialist appointments

As well as your general health checks, you may get referred to specialists. These doctors are experts in one type of treatment or part of the body. You might see a specialist if you have GvHD affecting certain organs. You might also regularly see specialists like dentists, opticians, urologists or gynaecologists so they can quickly treat any problems.

Donor lymphocyte infusion (DLI)

Your transplant team will look at your chimerism in your general check-ups. This is the proportion of blood cells that come from your donor compared to your own. However, if your chimerism is low, you might need a ‘top-up’ of cells from your donor, which we call a DLI. This simple procedure is very similar to a blood transfusion. For more information, see our page about DLIs.

High dependency unit

Some people may need specialist care on a high-dependency or intensive care unit (ICU). If you become very unwell, these units offer essential care, support and close observation in a hospital environment.