You’ve Been Told You Have PH. What’s Next?

You've Been Told You Have Pulmonary Hypertension: What's Next?
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You have been told that you have pulmonary hypertension. This may have been by your primary doctor, a cardiologist, or a pulmonologist. Or you may have read it for yourself on a report. This may have been stated after you had an echocardiogram, or you may have already had the definitive test of a right heart catheterization.

This section is designed to help you digest this initial diagnosis, and work through how it is approached at a pulmonary hypertension center.

In patients who have pulmonary hypertension, most first heard about this diagnosis after an echocardiogram. Sometimes the echo was done to investigate symptoms like shortness of breath, sometimes it may have been done for another reason. But on the report there is a diagnosis of “pulmonary hypertension.”

It is important to know that while an echo is important for screening, meaning looking for the possibility of pulmonary hypertension, it is important to go through a complete evaluation to really understand 1. Whether you have pulmonary hypertension, and 2. If so, what type?

There is a lot of information on the internet about pulmonary hypertension, but the difficulty is, especially in the early phase of getting a diagnosis, knowing which information really applies to you and your condition. Pulmonary hypertension means high blood pressure in the blood vessels in the lungs, but there are many different types of this disease, each with different treatments and different prognoses. For example, pulmonary arterial hypertension is a disease of the arteries in the lungs, and for this there are special medications that help relax and open up the blood vessels, putting less strain on the right side of the heart, and helping people feel better. However, even more common than PAH is pulmonary hypertension due to left sided heart disease. This can be someone with a history of congestive heart failure, or someone with stiffness on the left side of the heart (known as diastolic dysfunction), and the treatment of this type of disease is very different. Likewise people living with chronic lung diseases like COPD/emphysema or pulmonary fibrosis can develop pulmonary hypertension, and again the treatments are different in these situations as well.

At a pulmonary hypertension center, doctors will utilize a series of tests to help understand which type of pulmonary hypertension you might have and use all of these tests along with right heart catheterization to provide a full picture of the diagnosis. This complete diagnosis is critical to being able to make the best treatment plan for you.

So what’s next? If you have been told you have pulmonary hypertension or if you read it yourself on the report, it is important to talk to your doctor about the next steps. If you are being treated by a pulmonary hypertension expert, they may already be doing all of these next steps and working with you on a plan to make the right diagnosis. Or your doctor may wish to refer you to a center that specializes in PH.

This information is intended for educational purposes only and not to be used to change or direct medical care. This information should not replace direction by your treating care team and all medical management should be directed by your PH treating physician and your care team.
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