What can I do next?
As a patient or caregiver, you can play an active role in PTLD care. You know your needs and limits best — it's okay to rely on others and ask for support.
Take care of your mental health and well-being
Dealing with a serious health issue is especially hard when you've already been through a transplant. Remember to be kind to yourself. You can try:
- giving yourself time to process your feelings — anger, denial, fear, and anxiety are all valid
- writing in a journal or talking with friends, family, or a professional
- setting a realistic goal for yourself each day
- focusing on eating well, staying active, and sleeping well
-
finding and doing what brings you joy and positive energy, like:
- going outside for some sun, a walk, or a run
- spending time with friends and family
- reading your favorite book
- listening to music
- drinking from your favorite glass or mug
- avoiding people or things that bring you down
Learn about PTLD
Everyone learns differently and at a different pace. You can also choose how much you want to learn. Find what's most comfortable for you.
You can learn about PTLD by:
- asking your transplant team
- reading this website
- reaching out to organizations that offer educational support
Learning more about PTLD and the treatment options may help with:
- noticing symptoms
- preparing for treatment (e.g., arranging transportation or time away from home or work)
- bringing up concerns, wants, goals, and questions to your transplant team
You can also share what you've learned with others. It may help them understand what you're going through and how they can support you.
What caregivers of young patients can do
Young patients may feel more comfortable with what's going on if they understand what PTLD is.
If they are interested, the
What causes EBV‑positive PTLD?
video explains EBV‑positive PTLD through animated characters, simple language, and pictures.
Stay in touch with your transplant team
Staying in touch with your transplant team can make getting the care or answers you need easier, especially if a transplant-related complication like PTLD comes up.
You can reach out to your transplant team even if you haven't seen them in a while. If you've lost contact with your transplant team, talk to your primary care provider, or if under 18, a pediatrician. They may be able to reach the transplant team for you.
Take part in your care
A lot happens in a medical appointment. Your needs, goals, and wants are an important part of the conversation. It's common to forget to ask questions or lose track of what was said. It can also be hard to find the right moment to say what you're thinking.
If that sounds familiar, you can try:
- writing down your thoughts and questions as they come up, and bringing them to the appointment with you — this website has ideas for questions to ask
- asking your doctor to slow down, repeat, or explain if something is confusing or unclear
- bringing someone to the appointment with you as moral support or to help with taking notes
What caregivers of young patients can do
You can check in with young patients regularly to get a better idea of how they are doing physically and emotionally. They may have needs and preferences that aren't obvious. This can help you support them when talking with the transplant team.
Reach out for support
It’s okay to rely on others for support. It can feel uncomfortable, but you might be surprised by how happy people are to help, even if they’ve helped before. Small things can make a difference, like:
- picking up groceries
- preparing meals
- coming with you to an appointment
- helping with rides or travel arrangements
- catching up or spending time together
For more ideas and ways to find support, you can visit the support and resources page or ask your transplant team.