Who manages PAH patients in the US?:
Most PAH patients are usually managed by specialty medical centers who see lots of patients with PAH, and are familiar with FDA-approved and experimental and/or off-label medications used to treat PAH. Most of these medical centers are "academic" institutions, with university-affiliated faculty heading the center. Usually the centers have at least one nurse specialist to oversee the complexities of PAH and its treatments.
What do you mean by "lots of patients"?:
This is of course a relative and subjective term. Since (it is thought) there are only a few thousand people in the world with PAH, a medical center that takes care of perhaps more than 30 patients, and sees more than 10-15 new patients per year, might be considered to be experienced in dealing with PAH. Of course, if this same center only saw 30 patients with high cholesterol per year, given that so many of us have high cholesterol, they would not be considered to have particular expertise in the field of hyperlipidemia.
Can I exercise with PAH?:
When possible, doctors like to use the results of controlled clinical to base their strategy for management of their patients. Unfortunately, this is often impossible because we can't possibly study all strategies for all clinical problems. Thus, doctors practice what is often referred to as "the art of medicine," which means using sound, rational approaches and making decisions using what is already known. When it comes to exercise and PAH, since there has not been a trial of determining how regular exercise (like working out in a gym, bicycling, swimming, etc) is tolerated in PAH patients, a definitive answer to the question of exercise cannot be given. It is best to discuss the issue with your PAH specialist since he/she knows you best. The PHA has put together a small statement on exercise in PAH on their website HERE
What is the future of PAH treatment?:
Over the past 20 years, many important advancements have been made towards improving the lives of patients with PAH.
This has come in the form of medicines such as epoprostenol (Flolan), bosentan (Tracleer), treprostinil (Remodulin),
iloprost (Ventavis), and several newer medications such as ambrisentan (Letairis), macitentan (Opsumit), sildenafil (Revatio),
tadalafil (Adcirca), riociguat (Adempas), and selexipag (Uptravi). In addition, better ways to diagnose and follow PAH have also been developed and perfected,
such as cardiopulmonary exercise testing (CPET).
What can I do to help?:
Increasing the awareness of PAH can help. Joining local support groups, planning and attending fundraising events, and supporting the Pulmonary Hypertension Association www.phassociation.org will work wonders.
Dr. Oudiz has been the Director of the Liu Center for Pulmonary Hypertension since 1998. He and his staff welcome you to the Liu Center website. Please do not hesitate to call us with questions or concerns, at: THANK YOU FOR YOUR SUPPORT!
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