People who do not know about PAH may not fully understand how you are feeling. To them, you may look and seem healthy, but in reality you may be experiencing a range of symptoms and feelings. You may want to tell them how PAH affects you. This can help others understand your limits.

Although at first you may feel embarrassed to openly discuss PAH and its effects on your quality of life, talking to someone can be helpful. You may find comfort in sharing your thoughts, feelings, and experiences with a friend or relative and with your healthcare team. A good relationship with others makes it easier to discuss your concerns. The more your support network knows and understands about you, the better they can help.

If it is difficult to talk to your family or friends about certain topics, you may consider asking your healthcare team for help. They may be able to refer you to a social worker, counselor, or psychologist. Support groups can also be a great source of support and comfort with many aspects of day-to-day living with PAH.

You can make many choices to help maintain a healthy lifestyle while living with the symptoms of PAH. Making these choices can help you to achieve the things you want.

Eating healthy, being active in your day-to-day life (eg, grocery shopping, gardening), learning how to cope with fatigue, and sharing your feelings are just some of the things that can make a difference in how you feel and how you adjust to living with PAH.

Just like everyone, you should aim to have a healthy diet and to maintain a healthy weight. If you notice any significant weight loss or gain, tell your healthcare team.

Speak with your healthcare team about additional considerations for eating well with PAH. Certain foods, especially those with a high salt content, can contribute to swelling or build-up of excess fluid in your body. Your doctor will also be able to advise you of any food or vitamins that may interact with your medicines and therefore should be avoided.

What is the right level of exercise for you?

It may be hard to know how much or what type of exercise is possible with PAH, and the exercise plan should be individualized for each patient. With help from your healthcare team, you can figure out the level of activity that is appropriate for you. Choose activities that you enjoy and that make you feel good.

Here are some helpful tips:

• Start out slowly and listen to your body
• Have enough breath to be able to talk
• Adjust your activity before you become tired
• If you experience any symptoms that concern you, for example dizziness or chest pain, contact your doctor

If you have any concerns or simply want to have reassurance that you are doing the right amount of activity, speak with your healthcare team. Gym instructors, personal trainers, or people with similar jobs may not understand how PAH can affect an individual.

Many patient support groups are dedicated to helping patients with PAH, their caregivers, and their families.

If you haven’t already joined a patient support group or are unfamiliar with what they offer their members, patient support groups can be invaluable in helping patients and their families to learn more about living well with the condition. They can also help you meet other people affected by PAH and provide advice.

Find a patient support group near you.

A common symptom of PAH can be extreme fatigue. It may feel different from feeling run down or tired from lack of sleep. Getting to know your body and understanding the signs it gives are important. This will enable you to rest when your body needs it.

Keeping notes or a diary of when you have felt particularly tired will help you to notice, and then avoid specific triggers. A diary can help you know the times of the day when you are at your best and which activities use the most energy. This can help you adapt to situations and plan for both your everyday activities and the bigger events in your life.

If you plan to start a family or become pregnant, it is important to speak to your doctor, as there can be risks and an increased chance of complications for the mother and the unborn child.

Your ability to keep working is based on how you feel, the choices you make, and the type of job you have. Your employer may be able to offer you some flexibility, as well. Your support group may be able to provide information on laws related to your rights in the workplace or what to do if you are self-employed.

For children still in school and people in college who have PAH, consider speaking to the appropriate person at that institution so that he/she can provide support if practical changes are needed—for example, rearranging a timetable, assignments, or exams. Reach out to your social worker or support group for further information.

Ask your social worker or support group for advice on finding more information on support services available to you.

It is important that you talk with your doctor if you plan to travel, especially if you plan to take a flight or visit places at higher altitudes.

Altitude may cause breathing difficulties, so you should check with your doctor well in advance of booking your flight. You may need supplemental oxygen on board or other additional assistance at the airport. It is also important to ensure that you are covered by the appropriate insurance (ie, medical and/or travel insurance).