CTEPH Symptoms and Risk Factors
Chronic thromboembolic pulmonary hypertension (CTEPH) can develop in people who have experienced an acute pulmonary embolism (a blood clot in your lungs [PE]). In fact, as many as 1 out of every 25 people who had a PE (even those who were treated with at least 3 months of anticoagulants [blood thinners]), could develop CTEPH.* An acute PE can happen when a certain type of blood clot called deep vein thrombosis (DVT) travels from your leg or another part of your body to an artery in your lung, where it then gets stuck.
An acute PE can cause you to feel short of breath, have chest pain, and cough up blood. While CTEPH is rare, it generally appears in someone within 6 months to 2 years of experiencing an acute PE. If you had PE in the past and are still experiencing shortness of breath, talk to your doctor.
People who've been treated for PE and still have symptoms after 3 months could have CTEPH.
What does it feel like to have CTEPH?
Unfortunately, there is no way for a doctor to tell that you definitely have CTEPH based on symptoms alone. This is because the most common symptoms of CTEPH are also common symptoms of other diseases, such as asthma, chronic obstructive pulmonary disease (COPD), heart failure, or acute PE. If you have CTEPH, some things you may experience include:
- Feeling short of breath with activity
- Tiredness and fatigue
- Depressed mood
How can an acute PE lead to CTEPH?
An acute PE can increase the risk of developing CTEPH, especially in those who:
- Have experienced more than one PE in their life
- Were young or old when their PE was discovered
- Have very high blood pressure in their lungs’ arteries (greater than 50 mm Hg) when their PE is discovered
- Experience high blood pressure in the lungs for at least 6 months after their PE has been treated
SOMEONE WHO HAS HAD AN ACUTE PE COULD BE AT RISK FOR CTEPH.
1 IN 25 PEOPLE WHO HAD A PE COULD DEVELOP CTEPH*
If you had a pulmonary embolism (a blood clot in your lungs) in the past and are still experiencing shortness of breath, ask your doctor if you've received a V/Q scan to rule out potentially curable CTEPH.
What are some additional risk factors of CTEPH?
You don’t have to experience an acute PE to get diagnosed with CTEPH. There are other conditions that can cause CTEPH, including:
- Having your spleen removed
- Having infected surgical cardiac shunts, pacemakers, or defibrillator leads
- Chronic inflammatory disorders
- Thyroid replacement therapy
- Having a high risk for blood clots
- Genetic factors
WHILE THESE ARE COMMON RISK FACTORS, IT’S POSSIBLE TO DEVELOP CTEPH WITHOUT A HISTORY OF AN ACUTE PE OR ANY OF THE ABOVE CONDITIONS. TALK TO YOUR DOCTOR ABOUT ANY SYMPTOMS YOU MAY BE EXPERIENCING.
*Based on a study with 223 patients in which approximately 4% were diagnosed with CTEPH within 2 years of their first episode of pulmonary embolism (blood clot in the lung). CTEPH did not develop after two years in any of the remaining patients.
NEXT: How CTEPH is Diagnosed