What you may be experiencing
Common symptoms of PAH can include the following:
- Chest pain
- Shortness of breath
- Swollen abdomen
- Swollen ankles
- Irregular heartbeat
- Lightheadedness, fainting
At first, you may have hardly noticed your symptoms. But as PAH progresses, you may find it difficult to perform routine activities. You may feel worn out, and you may even faint.
Whether you are newly diagnosed, or you have been living with PAH for several years, your healthcare provider will continually monitor your symptoms. Your symptoms are an important source of information for diagnosis and management of PAH.
When discussing your symptoms with you, your healthcare provider may decide to run tests to help establish or confirm a PAH diagnosis.
The PAH symptom checklist
Do you have symptoms of PAH?
Tell your healthcare provider about your symptoms
PAH is rare, so these symptoms can be easy to overlook. That’s why it’s important to talk to your healthcare provider about any symptoms you experience, no matter how minor they seem.
Once you are diagnosed, your healthcare provider continues to watch your symptoms to see how well you are doing and to determine which treatments might be effective for you.
Knowing your symptoms—and how they change with daily activities—is important information that helps your healthcare provider understand how you are doing today and how you will be doing in the future.
What symptoms are you experiencing?
Use this checklist to identify your symptoms. Select all the symptoms that apply to you. Then, go to the next section below to rate your symptoms.
Improving your symptoms could have a positive effect on your risk status.
Knowing your symptoms
Watch Dr. Lana Melendres-Groves as she explains more about the symptoms you may experience with PAH.
Click to expand transcript
Knowing about the symptoms you experience and when you experience them helps your healthcare provider assess whether your condition is improving, staying the same, or getting worse. This is key to determining the right treatment plan. You are likely familiar with at least some of the PAH symptoms like shortness of breath, a rapid, hard, irregular heartbeat, chest pain, swollen ankles, a swollen abdomen, or even dizziness and fainting. Over time, as the disease progresses, the symptoms get worse and you may find that you cannot do as much physically. It’s important to note that symptoms may not always reflect whether PAH is progressing or how it is affecting your body. Even if your symptoms remain the same, there still may be more you can do to help improve how you feel. Sometimes people with PAH try to ignore their symptoms until they become more extreme, but when it comes to PAH, it’s important to speak with your doctor about how you are doing.
Effectively treating PAH sooner rather than later can make a difference in how quickly your PAH progresses. So it’s important to be your own advocate and to find an experienced PAH doctor. Not all pulmonologists and cardiologists have specialized PAH training, so it’s important to find a PAH doctor who understands each of the available PAH medications.
Taking a closer look at your symptoms
Are your PAH symptoms making it difficult for you to participate in everyday activities? If your symptoms are staying the same or not getting better, your PAH may not be adequately controlled.
Review the list below. For each activity, rate your symptoms based on how you feel. Choose all that apply.
Walking up stairs
Walking the dog
Preparing a meal
What can you do about your symptoms?
If you’re still experiencing symptoms, or your symptoms are not improving, you can:
- Download this checklist
- Fill it out just like you did here
- Take it with you and talk to your healthcare provider about your symptoms
Your healthcare provider can assess your treatment plan and consider whether changes may be needed.
If you don’t see your checklist in your inbox, be sure to check your email spam folder.
Talking to your healthcare provider about your symptoms
PAH gets worse over time. If you notice your symptoms changing, discuss those changes with your healthcare provider. It might be time to adjust your treatment.
Your healthcare provider needs to know how you’re feeling, what concerns you have, and what’s happened since your last visit. This information can help your healthcare provider make decisions about whether to adjust the dose of your medication or add medication to control your symptoms.
The PAH Initiative offers a PAH Doctor Discussion Tool (right) that can help you start conversations with your healthcare provider. You can do your part by printing and filling out this tool, then discussing it at your next appointment.
PAH Doctor Discussion Tool
PAH knowledge is PAH power
True or false? Difficulty breathing can be a symptom of PAH.
When you feel symptoms that could be related to PAH, you should:
Why is it important to improve your symptoms of PAH?
Improving your symptoms of PAH can have a positive effect on your risk status. Improving your risk status, in turn, can increase the chances that you’ll be doing better now and over the next 5 years.