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PubMed This is a summary of 57 peer-reviewed journal articles Updated
Cardiology

Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Resource Guide

At a Glance

Chronic Thromboembolic Pulmonary Hypertension (CTEPH) is a rare but potentially curable condition caused by blood clots in the lungs that turn into permanent scar tissue. This blocks blood flow and strains the heart. Patients have advanced treatment options including specialized surgery and medication.

If you are reading this, you or a loved one may have recently been diagnosed with Chronic Thromboembolic Pulmonary Hypertension (CTEPH), or you might be undergoing testing for it. Hearing this diagnosis is often scary, confusing, and overwhelming. You might have spent months or even years searching for answers to explain why you are still short of breath long after a blood clot.

First, know this: your symptoms are real, your frustration is valid, and there is immense hope.

CTEPH is a rare condition that occurs when blood clots in the lungs (pulmonary emboli) fail to dissolve and instead turn into permanent scar tissue. This scar tissue blocks blood flow and puts dangerous pressure on the right side of your heart. However, unlike many other forms of pulmonary hypertension, CTEPH is potentially curable.

Over the last decade, treatments have advanced dramatically. From specialized, life-saving surgeries to minimally invasive balloon procedures and targeted medications, patients today have options and outcomes that were unimaginable just a few years ago.

How to Use This Guide

This resource is designed to empower you. It translates complex medical jargon into plain language so you can understand your condition, evaluate your options, and become an active partner with your medical team. It does not provide medical advice, but it will give you the tools to ask the right questions.

We recommend reading through the guide step-by-step:

01

The Biology of CTEPH: How Clots Become Permanent Scars

Learn how pulmonary embolisms turn into permanent scars in CTEPH. Understand the 3-month diagnosis waiting period, right heart strain, and risk factors.

02

Diagnosis and Understanding Your Tests for CTEPH

Learn about CTEPH diagnosis and testing. Understand your V/Q scan, right heart catheterization results, and what terms like mPAP and PVR mean for your care.

03

Treatment Strategy and Your Care Team for CTEPH

Explore treatment options for Chronic Thromboembolic Pulmonary Hypertension (CTEPH). Learn about PEA surgery, BPA procedures, medications, and care teams.

04

Recovery, Monitoring, and Your Life After CTEPH Treatment

Learn what to expect during CTEPH recovery and life after PEA or BPA treatment. Understand milestone check-ups, lifelong monitoring, and residual PH care.

You do not have to navigate this journey alone. Take your time, read through the sections that matter most to you right now, and use the provided questions to guide the conversation at your next doctor’s appointment.

Common questions in this guide

What is Chronic Thromboembolic Pulmonary Hypertension (CTEPH)?
CTEPH is a rare condition that occurs when blood clots in the lungs do not completely dissolve. Instead, they turn into permanent scar tissue that blocks blood flow and puts dangerous pressure on the right side of your heart.
Is CTEPH a curable condition?
Unlike many other forms of pulmonary hypertension, CTEPH is potentially curable. Advanced treatments available today include specialized surgeries, minimally invasive balloon procedures, and targeted medications that can dramatically improve outcomes.
What kind of doctors should treat my CTEPH?
Because CTEPH is a rare and complex disease, you should be evaluated at a specialized, high-volume CTEPH multidisciplinary center. Your care team will usually involve experts in cardiology, pulmonology, and surgery working together.
How do blood clots in the lungs cause CTEPH?
Normally, your body dissolves a blood clot in the lungs over time. In patients who develop CTEPH, these temporary clots fail to clear and harden into permanent scar tissue inside the pulmonary arteries, restricting normal blood flow.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Are we referring me to a specialized, high-volume CTEPH multidisciplinary center for evaluation?
  2. 2.What specific diagnostic milestones do we need to reach before confirming this is CTEPH and not another condition?
  3. 3.Who will be the "quarterback" of my care team as we coordinate between cardiology, pulmonology, and surgery?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

This guide provides an educational overview of Chronic Thromboembolic Pulmonary Hypertension (CTEPH). It is for informational purposes only and does not replace professional medical evaluation by a specialized CTEPH multidisciplinary team.

Get notified when new evidence is published on Chronic thromboembolic pulmonary hypertension.

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