Dyspnea Detective: Uncovering the Hidden Cause of Persistent Breathlessness after a Pulmonary Embolism

If you or someone you know has experienced persistent shortness of breath after recovering from a pulmonary embolism, it might be time to ask:

Could this be more than just a lingering symptom?

Let’s explore a condition called Chronic Thromboembolic Pulmonary Hypertension (CTEPH) and how recognizing its signs early can lead to life-changing treatments.

Dyspnea after Pulmonary Embolism

Table of Contents

Michael’s Story

Michael, a 49-year-old man with a history of hypertension, obesity, and sleep apnea, had a pulmonary embolism—a blood clot in his lungs—several months ago. Michael, a retired high school teacher, was used to being active and involved in his community, often coaching basketball and organizing local events. While his initial treatment, including anticoagulant medications to dissolve the clot and prevent new ones, resolved the immediate danger, his breathlessness never truly went away. Tasks that were once second nature, like carrying groceries or taking his golden retriever, Max, for a walk, now left him gasping for air and feeling defeated. Everyday tasks like climbing stairs left him unusually winded.

For many patients, recovering from a pulmonary embolism (PE) marks a milestone in their health journey. However, when persistent breathlessness lingers long after treatment, it’s often dismissed as residual deconditioning or anxiety. What if it’s something more serious? 

Man walking with his dog
Man walking with his dog

Michael’s Journey: From Pulmonary Embolism to CTEPH Diagnosis

Michael’s story is typical of patients whose persistent symptoms are underestimated. Following his pulmonary embolism, he was prescribed anticoagulants and reassured that his condition would improve. But the fatigue, chest discomfort, and shortness of breath persisted. Everyday tasks like carrying groceries became Herculean efforts.

Michael’s doctor conducted routine tests like a chest X-ray, ECG, and pulmonary function tests (PFTs), all of which came back normal. Michael, however, couldn’t help but feel frustrated as he struggled to explain to friends and family why he wasn’t bouncing back the way he’d hoped. Still, his symptoms persisted. It was only after delving deeper into his history and symptoms that his healthcare team considered the possibility of CTEPH.

Close up of Pulmonary Report with ECG
Close Up of pulmonary report showing spirometry graph with an ECG graph behind it

What is CTEPH?

CTEPH, which affects about 2.5% of patients recovering from PE, occurs when blood clots fail to dissolve fully, leaving scar tissue that blocks blood flow in the lungs. The resulting pressure on the pulmonary arteries places extra strain on the heart. If left untreated, CTEPH can lead to significant morbidity and mortality. However, with timely diagnosis and treatment, patients can experience dramatic improvement—even full recovery.

Pulmonary Hypertension - What is cteph
Pulmonary Hypertension - What is cteph

Persistent breathlessness is the hallmark symptom of CTEPH, especially if it lingers months after a pulmonary embolism. Patients may also notice:

  • Fatigue
  • Reduced exercise tolerance
  • A feeling of heaviness or discomfort in the chest

While these symptoms overlap with other conditions, a history of pulmonary embolism is a key clue that warrants further investigation.

How is CTEPH Diagnosed?

Diagnosing CTEPH requires a systematic approach. For Michael, an echocardiogram was the first step towards an answer for his symptoms, revealing elevated pulmonary pressures. While this raised suspicion of pulmonary hypertension, it wasn’t enough for a definitive diagnosis.

Next came a ventilation-perfusion (V/Q) scan, a specialized test that highlighted areas of reduced blood flow in Michael’s lungs—hallmarks of unresolved clots. Finally, a right heart catheterization confirmed elevated pressures in his pulmonary arteries, sealing the diagnosis of CTEPH.

Ventilation-perfusion scan

Pulmonary Hypertension - Ventilation vs Perfusion
Ventilation vs Perfusion

These diagnostic tools, particularly the V/Q scan, remain the gold standard. Clinical guidelines, including those published by the Canadian Thoracic Society, emphasize their sensitivity compared to more commonly used imaging techniques like CT scans, which may miss subtle perfusion defects.

Treatment Brings Hope

The good news? CTEPH is not only treatable but potentially curable. For Michael, a referral to a specialized center confirmed he was a candidate for pulmonary endarterectomy (PEA), a surgical procedure that removes the scar tissue obstructing the pulmonary arteries. This surgery transformed Michael’s life, allowing him to return to activities he cherished, like volunteering. 

For patients who are not surgical candidates or who experience residual symptoms, other options exist. Balloon pulmonary angioplasty (BPA), a less invasive procedure than PEA, can help restore blood flow and improve symptoms. Additionally, targeted medications like Riociguat (approved by Health Canada for CTEPH) can alleviate symptoms. Pulmonary rehabilitation also plays a crucial role in enhancing physical capacity and quality of life. 

Why Early Recognition Matters

CTEPH is a treatable condition, with studies indicating that it affects approximately 2-3 percent of patients following a symptomatic pulmonary embolism. However, CTEPH can be overlooked due to its nonspecific symptoms and its rarity and studies indicate that delays in diagnosis often lead to worse outcomes. Many patients see multiple specialists before receiving a correct diagnosis, highlighting the need for greater awareness among healthcare providers.

For Michael, the proactive investigation of his symptoms made all the difference. Early detection and referral to a specialized center allowed him to access life-changing treatment.

Key Takeaways

If you or someone you know continues to struggle with breathlessness after a Pulmonary Embolism, it’s essential to advocate for further testing. CTEPH is rare but treatable, and early recognition is critical. As Michael’s story illustrates, timely diagnosis can open the door to effective therapies and a better quality of life.

For more information about pulmonary hypertension, including the symptoms, causes, and available treatments, visit the Pulmonary Hypertension FAQ on PHA Canada. Explore sections like What is Pulmonary Hypertension? and How is PH Diagnosed? for a deeper understanding.

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