Newly Diagnosed with Pulmonary Arterial Hypertension

Once you have been diagnosed with PAH, it is important to take some of these first steps.

Find Out All You Can About PAH

Learn what can cause PAH, treatment options and management of this disease, as well as how to find support.

Talk to your healthcare provider about your diagnosis to better understand what caused your PAH and how it will impact your life.

Get organized. Keep a file with all of your PAH information in one location. This will help you as you make your treatment decisions and manage your disease. 

  • Keep a list of your healthcare providers and their contact information
  • Keep a list of your medications
  • Use a calendar to track appointments and know when to schedule follow-up appointments
  • Write down questions you want to ask your healthcare provider prior to appointments
  • Monitor your symptoms to help determine if your current treatment is working for you

Prepare to Make Treatment Decisions

Get an appropriate referral. Because PAH is such a rare disease, it is extremely valuable to get a referral to a specialist at an accredited center to ensure you are getting the most up-to-date treatment options. 

Know your treatment options. Although there is no cure for PAH, there are medications and procedures that can slow the progression of the disease and improve your quality of life therefore it will be vital for you to work closely with your healthcare provider to determine the correct treatment plan.  

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.

Financial Concerns

If the cost of medical treatment is a burden for you and your family, you should talk to your healthcare team about your concerns and see what options are available. You can learn more about financial assistance that may be available to you by contacting the Lung HelpLine.

Clinical Trials

When treating your lung disease, it is important to consider all options. Talk to your healthcare provider about whether you would be a candidate for a clinical trial.

Talk to an Expert

Our Lung HelpLine is staffed by registered nurses and respiratory therapists ready to help answer your questions about PAH. Connect with us by phone, email or live chat.

More information on PAH is available at phassociation.org.

Reviewed and approved by the American Lung Association Scientific and Medical Editorial Review Panel.

Page last updated: June 7, 2024

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