Being diagnosed with pulmonary arterial hypertension (PAH) may be hard to accept. It can cause a variety of feelings, from shock and disbelief, to anger, fear, or sadness. It may also be a relief to leave uncertainty behind, to put a name to this condition, and learn how it can be managed.
One of the first steps in living with PAH is building a partnership with your healthcare team. Having a strong connection can help you to better manage your PAH and take a more active role in your condition.
To learn how one person builds a strong relationship with her doctor and how it helps contribute to her overall outlook, click on the "Building a PAH Partnership" video.
Our bodies excel at doing what we ask of them. When we run for a bus, or reach for our phones, our bodies instantly translate the oxygen we breathe and our energy reserves into coordinated movement. We don’t have to give it a second thought. It can be different for people with PAH.
It may be hard to believe, but for people living with PAH simple everyday tasks can feel as tough as climbing Mount Everest.
PAH is high blood pressure in the arteries that carry blood from the heart to the lungs. It's a serious condition that can make it difficult for blood to flow through the arteries of the lungs.
The right side of the heart has to work harder to pump blood, with a higher pressure, through these narrowed vessels and into the lungs. This causes the right side of the heart to become thicker and enlarged. Less blood will circulate through the lungs, picking up less oxygen overall for the rest of the body. This may make people with PAH feel tired and breathless. If PAH is not treated, the heart can become strained and overworked from the effort of trying to pump blood through the lungs.
Symptoms of PAH are often noticed when performing or carrying out physical activities, such as climbing up stairs, running, walking uphill, or carrying grocery bags.
As PAH progresses, these symptoms may be experienced more often and may start to impact one’s ability to undertake everyday activities.
There are many types of PAH. Often, it is idiopathic, which means the cause is not known. Rarely, it runs in families.
In some cases, PAH may be associated with other conditions, such as congenital heart disease or connective tissue disease. Some of the causes are known and some have yet to be identified. A doctor may be able to help a person with PAH understand what type he or she has.
For some patients, PAH remains at the forefront of their lives, whether they are running errands, meeting friends for coffee, or planning a vacation.
The U.S. PAH Patient and Caregiver Survey, supported by Actelion, revealed that the impact of PAH on those living with the condition extends far beyond the established physical symptoms of the disease.
PAH affects many aspects of daily life, and it can take some time to adjust to living with the condition. It is important to know that many patients share similar experiences as they adapt to life with PAH.
PAH affects many aspects of daily life and it can take some time to adjust to living with the condition. It is important to know that many caregivers share similar experiences as they adapt to caring for someone with PAH, as uncovered by the U.S. survey.
If you are a patient with PAH, this section has been developed to provide you with additional information on what to expect when living with PAH and tips to help you manage your feelings, manage your well-being, and move forward with a life beyond PAH.
Living with and managing PAH symptoms can have a significant emotional impact. It is important to know that you are not alone. These feelings are very common among people with PAH. Your family, friends, and other important people in your life, together with your healthcare team and support groups, are there for you when you need them.
To learn more about PAH, please download the educational brochures or visit the websites, below.