What should you know about living with chronic thromboembolic pulmonary hypertension (CTEPH)?

  • You will have to be on blood-thinners for the rest of your life. Warfarin (Coumadin®) is favored, but you might be able to switch to newer anticoagulants after a period of time.
  • Your healthcare provider may suggest a low-salt diet. In addition, you might have to be careful with some foods and drugs as a result of taking blood-thinners.
  • Your healthcare provider might suggest exercise, such as walking, as tolerated.
  • Your doctor might decide to insert an inferior vena cava filter (IVC filter) into your abdomen to stop clots from moving upward from the legs.

When should you call the doctor if you have or suspect CTEPH?

Call the doctor or 911 if you:

  • Have a fever
  • Have pain or other signs of infection, especially after surgery
  • Are suddenly unable to breathe well
  • Feel faint or actually do faint

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