Living with pulmonary arterial hypertension (PAH) can be challenging, but finding the right specialist can make a big difference in effectively managing this condition. With so many health care providers out there, it can be overwhelming to know where to begin. This article provides some helpful tips for finding a PAH specialist who can provide the care and support you need.

There is no cure for PAH, but there are treatment options that can help slow disease progression, ease your symptoms, and improve your quality of life. The key is finding a health care provider who specializes in PAH and is familiar with the best treatments.

PAH is a rare disease. According to the American Lung Association, just 500 to 1,000 new cases of PAH are diagnosed each year in the United States, a country of more than 334 million people.

With so few cases diagnosed each year, your cardiologist, pulmonologist, or other health care providers may have limited experience with this rare medical condition. In this article, we share tips and advice from myPHteam members to help you find a specialist.

1. Understand the Importance of Working With a PAH Specialist

Finding a PAH specialist can take some work, so understanding why you’re searching can motivate you to continue until you find a doctor who can help.

PAH is one of five types of pulmonary hypertension (PH). Although it shares some symptoms with other types of PH, like shortness of breath, chest pain, and fatigue, the high blood pressure it creates in the lungs is not caused by underlying lung or heart disease.

The exact cause of PAH is unknown, but some experts believe it is caused by damage to the cells that line the lung’s blood vessels. A doctor unfamiliar with PAH may treat you for another type of PH or another heart or lung disease, like chronic obstructive pulmonary disease (COPD), if they don’t understand the nuances of PAH.

What myPHteam Members Say

“When I was first diagnosed with PAH, I was seeing my primary care physician. He is certified in pulmonology and provided helpful tips, but it wasn’t until I started seeing a PAH specialist that I got medications specifically for PAH and began to see more progress.”

“I’m fortunate that I went to a PAH care center. They even knew how to treat PAH caused by a rare genetic disorder. My heart failure is reversing itself because my PAH is now better managed.”

“I have Sjögren’s syndrome, a connective tissue disease in the same family as systemic scleroderma. I am quite fortunate to have an excellent pulmonologist who has an impressive knowledge of Sjögren’s and is also a PAH expert.”

“I found a PAH specialist who confirmed that I have a rare form of our disease, idiopathic pulmonary arterial hypertension. He also discovered that I have heart failure. I’m hoping to have a heart and lung transplant.”

“I was going to a doctor who actually had me on the wrong meds. Luckily, I found a specialist that is fully educated on PAH. Now, I’m on the right meds and have felt great for five years.”

“Whether you have PAH or another type of PH, you must see a doctor that specializes in it. As patients, we have to be proactive, research as much as possible, and find a PAH specialist qualified to treat us.”

Now that you know why myPHteam members agree that working with a PAH specialist is important, here are their recommendations to help you find one.

2. Get a Referral

Ask your doctor to refer you to a PAH specialist.

“My pulmonologist set me up with a great cardiologist who deals with PAH and PH,” said one myPHteam member. “Ask your doctor if they can recommend someone.”

Another member said, “I have PAH, interstitial lung disease, and atrial fibrillation. My cardiologist did nothing for the PAH. I finally went to see a pulmonologist and, after a breathing test and chest X-ray, he immediately sent me to a critical care doctor who specializes in PAH and interstitial lung disease.”

Your primary care provider will likely be familiar with the referral process, as some health care plans require a referral to see any type of specialist.

Here are some questions you might ask:

• Are you familiar with any PAH specialists in the area?
• Can you write me a general referral and give me multiple recommendations so I can choose which specialist I want to see?
• Should I schedule a follow-up with you after I see the specialist?
• Here is the information for a PAH specialist I found online. Will you please refer me?

If you are seeing a pulmonologist, cardiologist, or other health care provider for PAH but sense that they don’t understand the disease, you may feel uncomfortable requesting a referral. Remember, your health comes first. In the words of one myPHteam member, “If you are not happy or getting better, keep looking until you find the right one.”

3. Ask Others

Another tip for finding a good PAH specialist is to ask others for help.

“I was diagnosed with PAH after they did a right heart catheterization, but I’m not in an area that has good doctors,” said one myPHteam member. “Thankfully, another PAH patient clued me in on a specialist who is world-renowned for treating PAH. That’s who I’m going to see.”

Here are some ways to find other people with PAH who might know of a specialist in your area:

• Local support groups
• Online support groups
• Your myPHteam Activities page
• Nonprofit organizations, like the American Lung Association and Pulmonary Hypertension Association

It’s also worth asking friends and family members, even if they don’t have PAH. Maybe they overheard someone talking about it at work or at a book club. You could also try posting on social media. Perhaps someone in your network has PAH or knows someone who does, even though they don’t talk about it on Facebook. People won’t know you need help unless you ask.

4. Search Online

Some myPHteam members recommend searching online for PAH specialists.

“I recommend everyone who needs help with PAH go to the Pulmonary Hypertension Association website,” said one myPHteam member. “They are the go-to experts and have a whole network of doctors and nurses all over the U.S.”

Another member said, “There are PAH specialists in the U.S., just not in every state. Go to the Pulmonary Hypertension Association website at phassociation.org. It should display care centers that are certified with the qualified specialists we seek.”

It is important to note that the Pulmonary Hypertension Association search function is not specific to PAH. It can help you identify potential providers in your area, but you should still contact the specialist to confirm that they treat PAH. Some may only treat PH.

Other ways to search online include using search engines like Google or Bing and health-focused resources like USA.gov, MedlinePlus, or your state health department.

Wherever you search, be sure to read reviews, ask questions, and check with your insurance company ahead of time to verify costs and coverage.

5. Contact Your Insurance Company

If you need help finding a PAH specialist, your health insurance company may be able to help.

“A good way to start searching for a PAH specialist is through your health insurance,” said one myPHteam member. “Contact your insurance company. They will help you find one. That’s what I did.”

Whether you see a specialist recommended by your health care plan or find one elsewhere, these are questions you may want to ask your insurance company before your appointment:

• Is this specialist in my network?
• If there are no in-network specialists in my area, can I see an out-of-network provider?
• What is my estimated out-of-pocket cost for this visit?
• Do I need approval or special authorization to see this specialist again?
• If this specialist is not a good fit, can you recommend another?

The Bottom Line

Finding a PAH specialist can take work, but it is worth it. Because PAH is a rare and progressive disease, having an experienced PAH care team create your treatment plan can increase your quality of life and maybe even your life expectancy. A PAH specialist will also understand the importance of regular echocardiograms, electrocardiograms (ECG or EKG), and blood tests to monitor your health.

“PAH is a rare disease, and most doctors don’t know much about it,” said a myPHteam member. “That’s why it’s important to find a good specialist. Call a Mayo Clinic near you. Call a good heart specialist for a referral. Ask other myPHteam members in your area who they see and if they’re satisfied. Ask doctors at your local hospital to give you a referral. You may have to travel to a large city. I drive an hour to mine. Good luck!”

Living with PAH can be a difficult experience, but finding the right specialist can help you manage your symptoms and improve your quality of life. By taking the time to research credentials and seek referrals, you can find a qualified PAH specialist who can provide you with the care and support you need. You don’t have to face PAH alone — there are resources and health care providers available to help you on your journey.

Talk With Others Who Understand

On myPHteam, the social network for people with pulmonary hypertension and their loved ones, more than 49,000 members come together to ask questions, give advice, and share their stories with others who understand life with pulmonary hypertension and pulmonary arterial hypertension.

Do you have a PAH specialist? Are you having trouble finding one? Share your tips and experience in the comments below, or start a conversation by posting on your Activities page.