Pre-Engraftment
After day “0”, the patients are waiting for the stem cells to grow. During this time, your physician will monitor your blood cells routinely to see if your white blood cells are starting to grow; you might need frequent red cells and platelet transfusions.
This is a critical time to monitor infection since you won't have an immune system to help fight infections. With any fever your doctors evaluate for possible infections and start antibiotics.
During this time, you can also develop something called mucositis which is the inflammation of the gastrointestinal system; you can gum inflammation and oral sores, sore throat and abdominal pain.
Many patients require strong pain medications to manage the pain associated with mucositis. Mucositis usually impedes patients from eating; some doctors might recommend nutrition through your central line during this time.
Tips
Take advantage of support services: Ask your care team what’s available at your center. Many offer social work, psychology, nutrition, and spiritual care.
Don’t be afraid to ask questions: It’s normal to feel intimidated, but your voice matters. Write down questions or bring a caregiver to help advocate.
Stay proactive: Don’t wait to bring up symptoms or concerns. Early communication helps your team respond quickly and effectively.
Don’t ignore your mental health: Emotional stress, anxiety, and depression are common. Support is available—ask for it.
Recognize different journeys: Patients and caregivers often experience the transplant process differently. It’s okay to have different emotions, needs, and coping styles.
Expect relationship challenges: Stress, fatigue, and shifting roles can strain relationships. Open communication and outside support can help.
New Departments
Depending on your needs, your care team may involve specialists from:
Psychology or psychiatry – for emotional and mental health support
Social work – for financial, housing, and caregiver resources
Pain and Palliative care – to help manage symptoms and improve quality of life
Nutrition – to support eating and hydration during treatment
Physical or occupational therapy – to help with strength and mobility
Spiritual care or chaplaincy – for those seeking comfort or guidance
Subspecialists- consultants/doctors from other specialties like heart and kidney that can help manage your care
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!