Living with Post-transplant lymphoproliferative disease
A complication of organ or stem cell transplant in which immune cells (lymphocytes) grow out of control.
Understanding Post-transplant lymphoproliferative disease
It occurs in people whose immune systems are intentionally suppressed after a solid organ or stem cell transplant. It can range from a mild, noncancerous overgrowth of tissue to a cancerous lymphoma. The digestive tract, nervous system or the transplanted organ are often involved.
Signs & symptoms
Symptoms are often vague and depend on the body parts involved. GARD lists these among the most common:
- Feeling unwell (malaise)
- Fever
- Weight loss
- Night sweats
- Tiredness (fatigue)
- Swollen lymph nodes
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include blood and bone marrow specialists and cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists); Cancer specialists (oncologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Blood Cancer United
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
PTLD is often caused by the Epstein-Barr virus (EBV), which infects B-cells. A weakened immune system can let EBV reactivate and make these cells grow out of control. It can also happen if a person first catches EBV after the transplant. Why it happens without EBV is not clear.
Also known as: lymphoproliferative disorder following transplantation; post-transplant lymphoproliferative disorder; post-transplantation lymphoproliferation; post-transplantation lymphoproliferative syndrome; ptld; ptld - post-transplant lymphoproliferative disorder
Patient organizations
- Blood Cancer UnitedPost-transplant lymphoproliferative disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Post-transplant lymphoproliferative disease.
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