What is CTEPH and Are You at Risk?

CTEPH Cover

Not only is recovery from a Pulmonary Embolism (PE) often long and complicated, it can also uncover or even lead to other problems that require attention, treatment and constant monitoring. For some, discovering a PE or DVT is just the beginning of a long struggle to find out first what is wrong and second, what to do about it. One of those conditions that can become a concern after a PE is Pulmonary Hypertension or PH. And, in particular, Chronic Thromboembolic Pulmonary Hypertension or CTEPH.

Pulmonary Hypertension is a rare and debilitating disease of the lungs, often described as high blood pressure in the lungs. PH affects the functioning of the heart and can lead to right heart failure and ultimately death. Without treatment, the average survival rate for PH patients is 2.8 years. CTEPH or Chronic Thromboembolic Pulmonary Hypertension is a form of pulmonary hypertension caused by old blood clots in the lungs (pulmonary emboli). In most patients who have suffered a blood clot, blood thinners are enough to restore blood flow to the lungs, improving breathing and exercise tolerance, however, a small amount of patients do not respond adequately to blood thinners, and develop CTEPH. In addition, some patients may develop CTEPH without any known history of blood clots. Like other forms of pulmonary hypertension, CTEPH  is a rare, progressive, and debilitating disease; but, unlike other forms of pulmonary hypertension, a cure for CTEPH exists, through surgery called pulmonary thromboendarterectomy, if the disease is caught early enough.

November is Pulmonary Hypertension (PH) Awareness Month and in honor of PH Awareness Month, the Pulmonary Hypertension Association has declared November 18 CTEPH Awareness Day. So, what can you do to spread the word and raise awareness?

Learn more about CTEPH.

You can help the Pulmonary Hypertension Association BUST CTEPH with Better Understanding, Screening and Treatment. I did not know about CTEPH until I heard about today and joined the efforts in raising awareness. Better understanding, routine screening and treatment can really make a difference and save lives. Here are some resources about CTPEH and CTEPH Awareness Day:

Know the symptoms of CTEPH and understand your risk.

The symptoms of CTEPH are quite similar to those of other types of PH. For some patients, chest pain may be a more prominent feature of CTEPH, possibly due to scarring in the lungs from a prior blood clot.

Symptoms of PH may include and generally worsen as the disease progresses:

  • Breathlessness
  • Chest pain (also called angina pectoris)
  • Dizziness
  • Fainting (also called syncope)
  • Loss of energy
  • Swelling of the arms, legs, ankles or abdomen (also called edema)
  • Dry cough
  • Raynaud’s phenomenon (chalky white or dusky blue fingers that may be painful and can sometimes be provoked by the cold)

You are at risk for CTEPH if you have had a PE. Approximately 1% of patients with an acute pulmonary embolism will develop CTEPH. People who have very large pulmonary emboli may be at increased risk of developing CTEPH.  Patients who already manifest some pulmonary hypertension at the time of diagnosis of a pulmonary embolism may also have an increased likelihood of developing CTEPH. Some underlying blood clotting disorders are more common in patients with CTEPH, though not all clotting disorders increase risk. Additionally, some chronic medical conditions are associated with increased CTEPH risk (Source).

Know what action to take.

CTEPH is an often overlooked form of PH and requires a ventilation/perfusion scan (V/Q scan) and/or a pulmonary angiogram. Find out more through these resources from the Pulmonary Hypertension Association for patients and for medical professionals.

Engage your audience.

Here are some social media images you can use today and any day to raise awareness about CTEPH.

Reader Writes In. Have you heard of CTEPH before now? Are you concerned about CTEPH? Do you have any information about understanding, screening or treatment that you would like to share?

There is hope for healing and you are not alone,

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