Living with Chronic thromboembolic pulmonary hypertension
A lung blood vessel disease caused by long-lasting blockage of the large arteries in the lungs, leading to breathlessness.
Understanding Chronic thromboembolic pulmonary hypertension
Up to 60% of people have no history of an acute pulmonary embolism (a sudden lung blood clot). Some people have clotting problems. Research suggests a genetic tendency toward abnormal healing after a pulmonary embolism, but no specific gene changes have been found. GARD lists onset at a variety of ages.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Shortness of breath with activity
- Tiredness (fatigue)
- Heart palpitations
- Fainting (syncope)
- Swelling (edema)
- Blood clots in the legs or lungs
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 lung and breathing specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Pulmonary Hypertension Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Lung and breathing specialists (pulmonologists)
- Expert care
- Expert lists: Pulmonary Hypertension Association
- 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 Pulmonary Hypertension Association and other patient organizations
- 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
GARD says it is caused by chronic blockage of the major lung arteries. No specific gene changes have been identified.
Also known as: cteph; cteph, dvt-negative, susceptibility to; pulmonary hypertension, chronic thromboembolic, without deep vein thrombosis, susceptibility to
Patient organizations
- Pulmonary Hypertension AssociationChronic thromboembolic pulmonary hypertension · United States
- American Lung AssociationChronic thromboembolic pulmonary hypertension · United States
- Phaware Global AssociationChronic thromboembolic pulmonary hypertension · United States
You are more than your diagnosis
Perspectives from people navigating life with Chronic thromboembolic pulmonary hypertension.
Explore research for Chronic thromboembolic pulmonary hypertension
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