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Living with CTEPH

It is important to learn about CTEPH, the medications used to prevent blood clots, and the treatment options including surgery and medications to improve pulmonary hypertension.

What to Expect

All patients with CTEPH need to be involved with their care. All CTEPH patients, including those who successfully undergo PTE surgery, should remain on blood thinners for the rest of their lives to prevent new blood clots from forming. There are many options for anticoagulation medications available and you and your doctor can discuss which option is best for you. No matter which anticoagulation medication a patient is prescribed, there are risks of bleeding. Your doctor will go through these risks prior to starting these medications.

If you are deemed to be a candidate for PTE surgery, then make sure your doctor sends you to a center with experience doing this operation. Though the needs of each individual may be different, most patients who are candidates for PTE surgery should expect to be in the hospital for about two weeks after surgery. The majority of patients feel their shortness of breath is improved immediately after surgery, but many have pain from the large incision over the breastbone. It takes about 2 months for the bone to heal after it is wired back together. During this time, patients should not drive, lift anything heavier than 10 pounds or submerge the wound in water (i.e., no swimming or baths).

Managing CTEPH

As mentioned, lifelong anticoagulation is recommended to prevent worsening CTEPH from recurrent blood clots.  You may be prescribed a low salt diet to help control blood pressure and the strain on your heart. Talk to your doctor about any special monitoring or changes in diet that might be required because of the blood thinner you are prescribed. Finally, exercise is important. While most patients with CTEPH have some limitations due to shortness of breath, you should be able to exercise at a low intensity like walking. Your body will tell you if you are over exerting yourself. If you develop severe shortness of breath or light-headedness, you should stop to rest.

Finding Support

There are many resources for patients with CTEPH. The Pulmonary Hypertension Association assists patients in finding CTEPH specialists, and provides access to support groups for others with CTEPH, including patients who have undergone PTE surgery.

    This content was developed in partnership with the CHEST Foundation, the philanthropic arm of the American College of Chest Physicians.

    Reviewed and approved by the American Lung Association Scientific and Medical Editorial Review Panel. Last reviewed December 13, 2016.

    Page Last Updated: March 13, 2018

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