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Survivorship and Long-Term Follow-up

Table of Contents

After the initial recovery phase, transplant patients enter survivorship—a long-term journey focused on maintaining health, managing late effects, and rebuilding life after treatment. This phase includes ongoing monitoring, lifestyle adjustments, and emotional support to help patients and families thrive.

What Survivorship Involves

  • Ongoing care – Regular follow-up visits, bloodwork, and screenings for relapse or late effects

  • Lifestyle adjustments – Nutrition, exercise, sleep, and stress management all play a role

  • Late effects management – Fatigue, hormonal changes, organ stress, and cognitive shifts may appear months or years later

  • Mental health support – Anxiety, trauma, and identity changes are common and treatable

  • Family planning – Discuss fertility, contraception, and pregnancy risks with your care team

  • Family mental health – Recovery affects everyone—check in with caregivers, siblings, and children

For a detailed list of recommended screenings, tests, and care at 2, 4, 6 years post-transplant, visit the CIBMTR Post-Transplant Guidelines.

These include both patient-friendly and clinician versions to help you stay on track.

What I Wish I Knew

  • That transitioning to adult survivorship may involve new providers, systems, or expectations

  • That long-term side effects—like infertility, fatigue, or cognitive changes—can appear gradually

  • That being informed helps you advocate for your needs and plan ahead

  • That survivorship is a journey, not a finish line

Questions to Ask

  • Why do I still feel like this—fatigue, brain fog, or emotional ups and downs?

  • How often will I need bloodwork or imaging?

  • Will my medication schedule change over time?

  • Will I need to change hospitals or care teams as I transition to adult survivorship?

Helpful Tips

  • Talk with others – Peer support, survivor groups, and therapy can help normalize your experience

  • Track changes – Keep a journal or app to monitor symptoms, emotions, and questions

  • Stay proactive – Ask about screenings, vaccines, and long-term planning—even if you feel well

Disclaimer: This Journey Map is for educational purposes only. It does not provide medical advice, diagnosis, or treatment. Every patient’s situation is unique, and care decisions should always be made in consultation with your clinical team.

We extend our appreciation to Sanofi and Alexion for their generous partnership and active participation in our community. Their support helped bring patients, caregivers, clinicians, and industry partners together to co-create this Journey Map and improve the transplant experience.

Our Journey Map was created for Patients and Caregivers by Patients and Caregivers. Please share any corrections or additions!