Living with Congenital pulmonary venous return anomaly
A heart development difference in which some or all of the lung veins drain to the wrong place.
Understanding Congenital pulmonary venous return anomaly
The veins drain into the right upper heart chamber or into body veins instead of the correct place. There may or may not be a blockage in the veins. It has two main types: partial (only one or a few veins are affected) and total (all of the lung veins are affected).
Signs & symptoms
Symptoms vary from person to person. GARD's summary mentions these:
- Tiring easily (fatigue)
- Shortness of breath with activity
- High blood pressure in the lung arteries
- Bluish skin color (cyanosis)
- Heart failure that gets worse over time
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 heart and blood vessel specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Heart and blood vessel specialists (cardiologists)
- 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 rare disease patient organizations for support
- 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 a development difference that forms before birth. GARD doesn't describe a specific cause.
Also known as: anomalous pulmonary venous connection; anomalous pulmonary venous drainage; apvc - anomalous pulmonary venous connection; apvd - anomalous pulmonary venous drainage; congenital pulmonary venous connection anomaly
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Congenital pulmonary venous return anomaly.
Explore research for Congenital pulmonary venous return anomaly
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- Recruiting studies from ClinicalTrials.gov
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