Post-PE Patient Management: Suggestions by a CTEPH Sufferer

In this post, I outline the necessary steps for patient management after a pulmonary embolism. I emphasize the importance of regular screening to detect chronic thromboembolic pulmonary hypertensionChronic Thromboembolic Pulmonary Hypertension CTEPH is short for chronic thromboembolic pulmonary hypertension, a rare form of high blood pressure in the lungs caused by blood clots or narrowed blood vessels. High blood pressure in the lungs is often also called pulmonary hypertension. (CTEPHChronic Thromboembolic Pulmonary Hypertension CTEPH is short for chronic thromboembolic pulmonary hypertension, a rare form of high blood pressure in the lungs caused by blood clots or narrowed blood vessels. High blood pressure in the lungs is often also called pulmonary hypertension.) early.

Early detection of this condition can minimize damage to the heart and greatly improve the chances of recovery. These suggestions are based on my personal experience as a CTEPH patient and my knowledge of the literature (see references).

A Progressive Disease

Chronic thromboembolic pulmonary hypertension (CTEPH) is a progressive disease. Early detection and treatment are crucial to avoid complications and death.
CTEPH and its sister disease, chronic thromboembolic pulmonary disease (CTEPD), remain underdiagnosed due to nonspecific symptoms such as shortness of breath and exercise intolerance.

My Story And Lesson

I initially suffered from mild shortness of breath and chest discomfort on exertion. Unfortunately, these symptoms quickly progressed to severe functional limitations, loss of appetite, and significant weight loss. I was eventually diagnosed with pulmonary embolism (PE), which led to a six-week hospital stay and subsequent treatment with anticoagulant medication (edoxaban).

Despite initial improvements, my symptoms worsened over time, and 15 months later, I was diagnosed with CTEPH. My right heart and kidneys were already damaged.

Regrettably, between my initial PE diagnosis and subsequent CTEPH diagnosis, we did not check for pulmonary hypertension. In hindsight, I learned valuable lessons from this.

Note: As you can see from other posts on this blog, things ultimately worked out well for me (check out these posts). It wasn’t always a sure thing back then, and it didn’t just happen. I had to put in significant effort to provide my story with a happy ending.

Promote Awareness

My goal is to raise awareness of CTEPH/CTEPD and promote early diagnosis so that others do not suffer as I did.

When caring for someone with PE, please follow the steps outlined in Table 1 and consider pulmonary hypertension as a possible cause of dyspnea and functional impairment. Late diagnosis of chronic thromboembolic pulmonary hypertension most certainly has a negative impact on the patient’s prognosis and outcome.

Refer To A CTEPH Expert Center

The longer the delay in diagnosis, the higher the mortality rates. Early treatment is critical to minimize damage to the right ventricle and other vital organs. Seeking care from experienced CTEPH expert centers gives the patient a high chance of curing the disease.

A Clear Message To Doctors

The message to doctors is clear: Refer patients to a CTEPH expert center as soon as possible when CTEPH is diagnosed or suspected. Establish a protocol for regularly checking PE patients for PHPulmonary Hypertension (PH) High pressure in the blood vessels leading from the heart to the lungs is called pulmonary hypertension. The arteries in the lungs and the right side of the heart are affected by pulmonary hypertension. If untreated, the right side of the heart will weaken over time, eventually leading to heart failure and death. The WHO has defined five distinct groups of pulmonary hypertension, each with a different cause. CTEPH is a form of PH (WHO group 4). - References: mayoclinic.org and cdc.gov symptoms for up to two years.