Why Monitoring Your Pulmonary Arterial Hypertension Is Important

This article is for people who have pulmonary arterial hypertension (PAH), or anyone who wants to learn more about monitoring PAH. The goal of this patient education activity is to help you understand what tests may be done to help monitor PAH and guide treatment.

You will learn about:

• Why PAH needs to be monitored

• Setting treatment goals to keep track of your PAH

• How PAH is monitored

• Tips for working with your doctor

• Questions to ask your doctor

PAH is a serious, lifelong condition. It is also progressive, which means that it can get worse over time. For example, you may be feeling fine and are active today, but in a few months, you might not feel the same or have the same energy levels. If you have your PAH followed closely (monitored) by your doctor, it may be possible to slow down PAH from getting worse.

By seeing your doctor regularly and getting routine tests done, you and your doctor can set treatment goals so that you can be on the best path to managing and staying ahead of your PAH.

A treatment goal is like a building block of your treatment plan. You and your doctor will work together to create treatment goals and track your progress throughout your PAH journey. There are short-term and long-term goals.

Short-term treatment goals include having fewer symptoms, feeling better and having more energy, and being able to complete your daily activities more easily.

Long-term goals include lowering your risk for serious complications (additional problems) from PAH -- such as heart failure (where your heart doesn't pump blood that well anymore), having to go to the hospital, or needing a lung transplant -- and even helping you live longer.

Short-term goals can be reached more quickly than long-term goals, but both require patience and sticking to your treatment plan to be successful.

Another long-term goal is to get to a lower PAH risk status. Risk status tells your doctor if your PAH is getting better or worse. Your risk status is calculated using the information gathered from each doctor visit.

There are 3 risk status levels in PAH: low, medium, and high. The goal is to get to and stay low risk.

Your treatment plan for PAH will depend on your risk status. So as your risk status changes over time, so will your PAH treatment.

There are many tools and tests to help assess (check) and monitor your PAH. The results from these will help tell your doctor how well you're doing with your PAH and treatment.

Tests to monitor PAH can include:

• 6-minute walk test that measures how far you can walk at your normal pace without stopping for 6 minutes

• Echocardiogram ("echo") that is noninvasive (doesn't break the skin or enter your body) and uses ultrasound to help show how well your heart and lungs are working

Other tests can include:

• Right heart catheterization (RHC), a minimally invasive test where a thin tube called a catheter is inserted into your heart and lung arteries to measure the pressure inside. This test is done when you're first diagnosed with PAH and may also be done once or twice a year if you're not feeling well or if are not responding to treatment

• B-type natriuretic peptide (BNP) blood test to check for high levels of this hormone in your body that may mean your heart is under stress and is working too hard

Because your PAH risk status can change from visit to visit, it's very important to go to all of your doctor's appointments as scheduled.

After being diagnosed with PAH, you might be asked to visit the doctor about once a month so they can see how you're doing with your treatment. Then, once you're stable or doing well, you may be scheduled to see them every 3 to 6 months.

But if you're not feeling well, don't wait for your next visit to get help. Call you doctor and let them know right away.

You're likely to be seeing your doctor a lot throughout your PAH journey, so it's important to be able to trust your doctor and feel comfortable with sharing information. Don't be shy or nervous about speaking up!

Some tips to help make the most of each visit include:

• Tell your doctor about your symptoms and if you're having any problem with your treatment

• Be prepared with questions to ask

• Bring a family member or someone you trust to the appointment for support or help with translating

• Take notes in your own words

• If you don't understand something, ask your doctor to repeat it

• Before leaving the doctor's office, review what you learned to make sure you understand the information your doctor gave you

At your next visit, you can ask these questions to help get the conversation started with your doctor:

• What's my PAH risk status right now?

• How am I doing with my treatment goals?

• What treatments are available, and how should I take them?

• How will I know if my PAH is getting worse?

• What can I do to live a healthy life with PAH?

Congratulations!

You have successfully completed the program Why Monitoring Your Pulmonary Arterial Hypertension Is Important

View Additional Materials on this topic that you may find useful:

What Is Pulmonary Hypertension?

Pulmonary Hypertension