Insights. Your PAH Resource.
  • Small
  • Medium
  • Large
Font size 
Living with PAH

Living with PAH may mean making some adjustments to the way you live. While there may be some activities that your doctor will ask you to limit, there are many enjoyable activities in which you can participate.

What should I know?

It is important to talk to your doctor about your condition. If there are things about PAH or about your treatment that you do not understand, ask your doctor to explain them to you. Taking an active role in your PAH treatment will give you the confidence to help manage this disease.

It is also important to be informed about financial assistance and support programs that may be available to you. There are a number of private and government programs that can help you to pay for part or all of your medications, insurance premiums, or both. Speak to your doctor and other healthcare professionals involved in your care about your financial assistance options.

Here are a few useful resources to help keep you informed:

  • Pulmonary Hypertension Association (PHA) offers education, support, advocacy, and awareness for the PAH community (www.phassociation.org)
  • A Patient's Survival Guide is a book filled with practical information on PAH, available from the PHA (www.phassociation.org)
  • Know Your PH is another source of information for patients with PAH, as well as for families and friends of those who are facing PAH (www.knowyourph.org)
  • PHCentral offers information and support for people living with PAH and their caregivers (www.phcentral.org)

Who should I talk to?

It can be very helpful to find someone to talk to about your experience with PAH (a friend, relative, doctor, or therapist). There are also a number of local or national PAH support groups that may be able to assist you. The Pulmonary Hypertension Association is an excellent resource to help you find a support program near you.

Can I exercise?

If you are able to exercise, and your doctor approves, moderate exercise may be beneficial to you. If your PAH is severe, you may wish to exercise in a controlled environment, such as a pulmonary rehabilitation center.

Share |