Steve Hartley, who had a stem cell transplant, with his family

Taking control of your recovery & living well

Being away from the security of the hospital can make some people feel helpless and anxious. Here are some tips on taking control and owning your recovery.

Taking control

If you are now at home it’s time to start ‘owning’ your recovery. It’s the first step in regaining some independence in your life, helping you to return to a new normal.

Recovering from a stem cell transplant will probably be the hardest thing you will ever do. Remember that you don’t have to do everything on your own and there are many ways other people can help. Living a healthy lifestyle that includes regular exercise, plenty of sleep, and relaxation techniques like yoga will give you the best chance of feeling both mentally and physically stronger.

You probably feel like you already have lots of things to think about when it comes to your recovery. If you record your information in a diary or our My Transplant Tracker app, it will help you:

  • Set goals
  • Set reminders
  • Check your progress

This might be as simple as making sure you take your medication for a week without forgetting or going for slightly longer walks each day, the choice is completely up to you.

The more in control you feel as a person, the more positive an experience it is.

Kate, who had a transplant in 2015 

Setting goals

Breaking down your big recovery targets into smaller, more manageable goals will make it easier to feel in control. When people can see improvement every day, it builds confidence and self-esteem.

Remember to give yourself credit for the things you achieve. It’s easy to always look ahead to the next step, the next goal. This might leave you feeling like you’re always striving for something and not quite where you want to be. Take time to notice what you have done and the progress you have made.

Feel free to set as many (or as few) goals as you want and are comfortable managing at the moment. To begin with, it might be something as simple as having a shower and getting dressed.

Here are a few other suggestions to get you thinking:

  • ExerciseBeing active reduces fatigue and improves your physical strength. Exercising and fresh air improves your mental health too. Regular exercise has been shown to reduce stress, relieve anxiety and improve self-esteem.

It's important to not overdo it as your fitness will have reduced during your treatment. Set yourself small goals and build on them gradually over time.

More information is available in our exercise and keeping active section.

  • Sleep – Difficulties sleeping  and mental health problems often go hand in hand. Many people know that things like stress and anxiety can make sleep more difficult. However, poor sleep can also contribute to a mental health problem starting, or make an existing one worse.

Everybody feels better after a good night’s sleep and it aids your recovery. If you record your sleep, you can look back at when problems occurred. This will help your medical team spot patterns and find ways to help.

Our managing fatigue section has more information on sleep hygiene.

  • Diet For many reasons, people often lose weight after transplant. But as you recover, your body actually needs more nutrients than usual to help your cells grow and repair. You might decide that you want to eat a certain number of calories per day, or aim to eat five portions of fruit and veg. Eating healthily will help you feel both physically and mentally stronger. 
  • Fluids It’s important to keep yourself hydrated to aid your recovery. Your body’s cells need water to work, and that includes your brain cells. Try to always have a water bottle with you, so you can drink the recommended amount. It might be easier to drink smaller amounts more often.

I think it’s really important to constantly have some kind of goal, even if it’s just to get out of bed that day.

Georgi, who had a transplant in 2015 

Setting reminders

There's always plenty to remember during your recovery so it's a good idea to come up with a strategy to help you keep on top of things.

  • Appointments After your transplant, you will need to visit the out-patient department regularly to check that everything is going well and possibly tweak your medication. You’ll also have regular blood tests to measure your blood count, liver and kidney function, and check for viruses.
  • Medication Trying to remember which medication to take and when isn’t always easy. Changes to medication will happen and adjusting to a new schedule can be hard. Putting reminders in your diary and storing the details will help make sure you don’t miss any.
  • Medical team During your transplant journey you will be at the centre of a large medical team that’s responsible for giving you the best possible care. They will be experts in their field and can help you with anything you need. It can sometimes be difficult to keep track of everybody’s name and what they do, so write down the name and contact details of your team.

I feel like I have to be my own stock taker at home. This is how many drugs I have got and this how long it’s going to last me.

Georgi, who had a transplant in 2015

Checking your progress

  • Mental wellbeing There will be days when you are physically and mentally drained, but there will also be good days when you feel on top of the world. There are great benefits to recording your emotional wellbeing. You gain a sense of progress, but it also highlights when you need extra support from friends, family or a professional.
  • Physical wellbeing Being able to accurately recall when you had certain side effects and how strong they were can help your team tailor your medication accordingly. Get in the habit of recording changes you experience, when it happened and how bad it was, perhaps using a 1–10 scale.
  • Medical data Your medical team will regularly count the different types of cell that make up your blood and other factors to check that your new immune system is working properly. These results are recorded every time you visit the hospital. You will be able to monitor your progress by looking at your:
    • white blood cell count – the cells that make up your immune system and fight infections
    • haemoglobin, which carries oxygen around your body and is found in red blood cells
    • platelets, which help the blood to clot following an injury
    • chimerism – the number of blood cells that come from your donor compared to your own - the ideal is 100% donor
    • temperature, which can be an early sign that you might have an infection
    • blood pressure, as transplant patients have an increased risk of high blood pressure.

Information published: 29/11/21

Next review due: 29/11/24