PAH Initiative Ambassadors are patients living with PAH or are caregivers, and they were compensated for their time.

Why do I need a PAH specialist?
The importance of a PAH specialist
Starting the conversation with your 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 pulmonary hypertension (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 (PHA) hosts a free, easy-to-use tool that is available to everyone.

PHA: Find a PH Specialist

Denise, PAH Initiative Patient Ambassador

"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 Patient Ambassador

Two perspectives: The importance of a PAH specialist

Patient perspective:
Why we sought a PAH specialist

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

[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: Laura PAH Initiative Ambassador]

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

[On Screen Text: Denise PAH Initiative Ambassador]

This disease is so rare that every doctor may not know about it. You may have to find that PAH specialist.

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

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

I know what I want and expect. And I will not take anything less than that.

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. If there’s something urgent, they’ll try to get them on the phone right away.

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.

I use MyChart, and we do all the testing every six months, and just keep on top of my 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]

PAH expert perspective:
“We are here to help and support you”

Listen to the insight of Dr. Lana Melendres-Groves on talking to your care team about when to consider a specialist.

I was just informed I have PAH; do I need to see a PAH specialist?

You have just been diagnosed with PAH.

One, you already have at least a portion of a care team or a physician or provider who is being thoughtful about the potential of pulmonary hypertension being present. And that I think goes a long way for me because it is a rare disease, and so, somebody was listening to what you were telling them and doing the testing necessary to be able to give you that diagnosis.

I think it is important to always feel that you can talk to that provider. I welcome the questions within my clinic and to me about what my area of expertise is, about my comfort level with all of the different types of therapies and treatment options, and so asking your provider if this would be an opportune time to find someone more specialized who may treat with all of the different therapies and be sort of up on all of the most pertinent research.

So I think, ask your provider because we are here to help and support you, and if you don’t feel that they may have all of the responses, we may not have all the answers, but we should have insights into what our patients need and deserve.

Start 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.

Download Doctor Discussion Guide