Newly Diagnosed with CTEPH?

Take These Important First Steps

• If you have been diagnosed with CTEPH, learn more about what can cause CTEPH, what your treatment options are and how to best manage your disease.
• It will be important for you to work closely with your healthcare provider to determine what treatment course is right for you as soon as possible. Get an appropriate referral. Because CTEPH is such a rare disease, it is extremely valuable to get a referral to a specialist at an expert CTEPH center to ensure you are getting the most up-to-date treatment options. 

Take Care of Yourself 

• Pulmonary Rehabilitation: Ask your healthcare provider if pulmonary rehabilitation (PR) is right for you. PR provides a structured environment for learning what exercise is right for you, the important role of nutrition in your health, learning how to manage your medications, and more.
• Nutrition: Good nutrition is important in managing your CTEPH. Talk to your healthcare provider about what foods are good for you and what your ideal weight should be.
• Medications: You may be on new medications to help manage your CTEPH. It is important to make sure that you are taking your medications as prescribed in order to get the maximum benefit. If your healthcare provider has prescribed oxygen therapy, make sure you know how to correctly use your oxygen delivery device. 
• Exercise: Talk to your healthcare provider about what types of exercise are right for you.  It is important to strengthen your muscles and work on breathing techniques that can improve your quality of life.
• Healthy Lungs: Quitting tobacco smoking is important to your lung health.  You do not have to quit alone.  You can find programs, resources and support at Quit Smoking. Talk to your healthcare provider about what vaccinations you should have to best protect your lungs.
• Connect With Others: No person facing a chronic lung disease should go through it alone. There are online and in-person support groups available. Finding a support group early in your journey will provide you with more opportunities to get information about your disease, empower you to better manage your disease, and give you the support you need.
  • Living With Lung Disease (online support community) 
  • Better Breathers Clubs (in-person and virtual support groups)