Find a PAH Specialist

Home / What Is PAH? / Find a PAH Specialist

Why do I need a PAH specialist?

Not all pulmonologists and cardiologists are PAH specialists

Pulmonologists are healthcare providers who specialize in treating the respiratory system, including the lungs, and cardiologists are healthcare providers who specialize in treating the cardiovascular system, including the heart. Pulmonary arterial hypertension (PAH) is a lung disease that affects the heart, so seeing a pulmonologist or cardiologist is a good start.

However, not all pulmonologists and cardiologists have experience in treating PAH. Many pulmonologists and cardiologists who don’t specialize in PAH will see only a handful of PAH patients in their careers. You may find that you have to travel to another town or city to visit a PAH specialist or PH care center.

PAH treatment guidelines recommend that if your healthcare provider is not a PAH specialist, they should refer you to one.

You can find a PAH specialist online with just a few clicks. The Pulmonary Hypertension Association hosts a free, easy-to-use tool that is available to everyone.

Find a PAH Specialist

“This disease is so rare that every doctor may not know about it. You need to see a PAH specialist because a PAH specialist is going to have a lot more dedicated knowledge to the PAH world.”

—Denise, PAH Initiative Ambassador

Why we sought out a PAH specialist

PAH patients and PAH Initiative Ambassadors Karen, Joanne, Laura, and Denise discuss the benefits of finding a PAH specialist as part of their care teams.

Click to expand transcript

[On Screen Text: Working with a PAH Expert. PAH Initiative - Sponsored by United Therapeutics - Committed to Improving the Lives of Patients.]

[On Screen Text: Karen PAH Initiative Ambassador]

It was a shock to have this diagnosis.

[On Screen Text: Joanne PAH Initiative Ambassador]

I learned very quickly after my diagnosis, that it was very, very important to see someone who specializes in pulmonary arterial hypertension.

[On Screen Text: Laura PAH Initiative Ambassador]

It's all confusing at first, it's scary and confusing.

I have seen in my support group, folks who want to stick to a doctor, maybe a local doctor that they know.

[On Screen Text: Denise PAH Initiative Ambassador]

This disease is so rare that every doctor may not know about it.

Even though you're comfortable with that doctor, it's important to find someone who specializes in this field because that person is going to have all of the knowledge that you are going to need.

I really think that you need to see a PAH specialist because a PAH specialist is going to have a lot more dedicated knowledge to the PAH world.

I would encourage others to go ahead and do their homework on this disease.

I walk in every appointment, I have my notes, I have my questions already written down.

I'm fighting for my life, and so when I'm in the doctor's office, I have to be selfish.

I fully take the lead and I will tell the doctor how I'm doing or what I've been doing.

Some doctors are great with helping you connect with support groups or helping you connect with someone who does have PAH.

If I have a question, I can call the main nurse of the department and they'll call me back within a day.

We have an app through the hospital. We communicate through email a lot, and we also have Facebook friends with my nurse. So, we are able to communicate in a lot of different ways nowadays.

And I have been incredibly fortunate to be under their care.

[On Screen Text: PAH Initiative - Sponsored by United Therapeutics - Committed to Improving the Lives of Patients. For more resources about PAH, please visit www.PAHInitiative.com]

Starting the conversation with your PAH specialist

Even when seeing a PAH specialist, you should feel empowered to ask questions, share your goals, and expect your healthcare team to be a partner in your care.

Not sure where to start? Download this discussion guide and bring it with you to your PAH specialist visit.

Discussion Guide PDF
PAH Doctor Discussion Tool
Discussion Guide PDF

PAH experience makes all the difference

Learn more about how PAH specialists use risk assessment to see a more complete picture of your unique PAH.

Understand PAH Risk Assessment