Coming home after your transplant

Am I ready to go home?

While a lot of people feel relieved and excited about going home, other people might worry about coping without the support they’ve had in hospital.

Your transplant team will only be happy for you to go home once they are sure you are safe and ready.

After your conditioning therapy, transplant, and time in protective isolation, you’ll have already spent a few weeks in hospital. In those weeks, you should have begun to get used to being a transplant recipient and having regular medical checks.

You might also feel more aware of your body and know how to spot the signs of any side effects.

What should I know before leaving hospital?

It’s important you feel well informed and prepared to go home. Your nurse will come to see you before you leave hospital for a ‘going home’ talk.

During this talk, they should provide you with:

• contact details for your transplant team, including an out-of-hours number
• information on looking after your central venous catheter (CVC), which you might know as your ‘central line’
• advice about nutrition, diet and some gentle physical exercise you can do at home
• information on what to do if there’s a sudden change in your temperature
• information on what to do if you develop a rash or diarrhoea
• your medication, with information on how and when to take it
• the date and time of your first appointment in the out-patients department.

How will I get used to life back at home?

Like a lot of people who have a stem cell transplant, when you get home you might find that:

• you aren’t as independent as you were before your transplant
• you have to rely on the help of your family and friends more than you were expecting.

This feeling will not last forever. As you begin to recover, you will begin to regain your independence.

Although being well enough to return home is a huge step in your recovery, the day-to-day reality of being at home can feel challenging. Many people are surprised by how isolated they feel during this time, because they find themselves spending a lot of time in the house alone.

I was very happy but when I first got home, I was feeling quite insecure. At the hospital there’s someone checking on you every couple of hours and if something’s wrong they can deal with it straight away. Even though I was home, I couldn’t mix with my family. I had to be in a separate room.

Bianca, who had a stem cell transplant to treat aplastic anaemia

Setting goals for yourself

Time might pass more quickly if you try breaking each day down into smaller time slots and setting goals for what you’d like to achieve. For example, you might decide to go for a 30-minute walk or spend an hour doing a craft you enjoy.

A small amount of exercise each day will also help reduce the effects of fatigue.

Sharing your transplant experience

Sharing your experience can be helpful for your recovery. You can let people know what it’s like to have a transplant and raise awareness about stem cell donation.

You might find it helpful to document your journey:

• either for yourself in a journal
• on social media to keep friends and family up to date
• or to share with the wider world as a blog, vlog or public social media profile.

Lots of people find that sharing with others can help to build a community, raise awareness and support your own mental health.

We also have some extra advice if you’re thinking about sharing your stem cell transplant experience online, or with others.

I wanted to share my story in case it helps anyone going through this situation, at whatever stage of their diagnosis or treatment, be they a patient or a family member. So, if sharing my experience can help somebody, if it resonates with just one person, that makes it worthwhile.

Darren, who had a stem cell transplant to treat peripheral T-cell lymphoma

Be careful with details in photos

Make sure the information label on your stem cell bag or any other identifying information is not visible if you post a photo.

You should also be careful if you’re planning to post photos from hospital on your social media or a blog – especially if there are people in the background who haven’t agreed to be in the photo.

Respect your donor's anonymity

You won’t be able to find out anything about your unrelated donor until two years after transplant. But you can communicate anonymously via your transplant centre or Anthony Nolan during this time.

If you both agree to direct contact after two years, you will be able to find out who they are. Before this time, don’t try to find out any personal details from them in your correspondence.

For more information, read our pages on getting in touch with your donor and writing to your donor.

Sharing directly with Anthony Nolan

There are different ways to get in touch with us to share your experiences:

Social media

We would love to read your social media posts, so make sure you tag us: @AnthonyNolan or @AnthonyNolanCharity, depending on the platform.

Writing a blog

If you’d like to tell a member of our team about your experience for our blog, email us at stories@anthonynolan.org

Talking to our team

If you have any questions, or would like more advice or support about sharing your experience, get in touch on 0303 303 0303 or email patientinfo@anthonynolan.org