You Think You Might Have PH — What’s Next?

Understanding Your Diagnosis and Taking Your Next Steps with Confidence

Finding out you may have pulmonary hypertension (PH) can bring up many emotions — worry, confusion, or even relief to finally have an explanation. These feelings are normal. This page will help you understand what your diagnosis means and what happens next, in simple, clear steps.

You do not have to figure this out alone. Your PH care team is here to guide you.

What Your Diagnosis Means

Many people first hear they “might have PH” after a test like an echocardiogram (heart ultrasound).

This test might suggest PH, but it cannot confirm the diagnosis on its own.

That’s because:

PH has different types, and each one has different treatments
Some people have PH related to lung disease or heart disease
Others may have a type of PH that needs very specific medicines

To know for sure, your care team will do a full evaluation. This helps them learn whether you truly have PH, what type it is, and what treatment is right for you.

You’ve been told you have PH, what’s next

What to Expect Next: Your PH Roadmap

Here is a simple overview of the steps most people take after being told they may have PH:

Step	What happens	Why it matters
1 Schedule a full PH evaluation	You may have more tests such as blood work, breathing tests, echocardiogram, lung imaging, and/or a right-heart catheterization	These tests confirm whether you have PH and identify the type of PH you have
2 Talk openly with your PH specialist	Bring questions. Ask what the first test showed and what the next steps should be	Clear communication helps you feel in control and understand your care plan
3 Learn that PH is not one single disease	PH has several groups, each with different causes	Your treatment will be based on the type of PH you have
4 Take time to process your emotions	Feeling scared, overwhelmed, or confused is common	Understanding your feelings helps you adjust and feel supported
5 Gather trusted information and resources	Use expert-reviewed information (like this website) and bring questions to your appointments	Helps you stay informed without feeling overwhelmed

What is Pulmonary Hypertension

Key Things to Remember

A first test does not give the full picture — more information is needed.
PH is a group of diseases, not a single condition.
Your care team will work with you to find the exact type you may have.
You will not have to make big decisions alone.
Many people feel better once they understand the process and next steps.

Tips to Help You Feel Prepared

Bring a support person to your appointments if possible. Two sets of ears can help!
Write down your questions ahead of time so you don’t forget them.
Keep your test results organized — a folder, notebook, or phone app works well.
Take care of yourself with rest, gentle activity, and healthy routines during this time.
Try not to learn everything at once. Start with the basics, then build from there.

Remember: Every PH journey begins with learning more — one step at a time.

You’re Not Alone

PH care is a team effort. As you move forward, your PH Care Team (doctor/nurse practitioner/physician assistant/nurse/medical assistant) will help you understand your condition and support you through each part of the process.

You are the most important member of your care team, and we’re here to support you.