Living With Pulmonary Hypertension: Living Your Best Life

This article is for people who have pulmonary hypertension (PH), or their care partners, as well as others who want to learn more about strategies to help manage PH. The goal is to help you set and meet treatment goals with your doctor to improve your quality of life (QoL).

You will learn about:

• How PH can affect your QoL

• Symptoms of PH and symptoms that require emergency medical care

• Setting treatment goals with your doctor

• Things you can do to help control your symptoms and manage your QoL

• Questions to ask your doctor

PH -- a type of high blood pressure that affects the arteries in the lungs and in the heart -- is a serious, lifelong illness that can affect your physical, mental, or emotional well-being.

Being aware of how your PH is affecting you (the symptoms you have and how they affect your QoL) can help you to take steps to make living with PH more manageable.

The most common symptoms of PH are:

• Being short of breath during normal activities

• Feeling tired

• Having chest pain

• Feeling like your heart is racing

• Feeling pain on the upper right side of your abdomen

• Having a poor appetite

Some symptoms are more serious than others. Symptoms that require you to seek emergency medical care are:

• Dizziness

• Chest pain

• Ankle swelling

• Feeling like your heart is pounding

If you have these symptoms call your doctor immediately, go to the emergency department, or call 911.

Knowing symptoms that require emergency medical care can help get the care you need to get your symptoms under control as quickly as possible.

You never know when you might need your medicines or supplies, so it's a good idea to keep them with you at all times.

A good way to do that is to put together a portable, easy-to-carry emergency kit that includes items like these:

• Emergency phone contacts and numbers

• Note from your doctor that describes your illness and important information that other healthcare providers might need

• List of the medicines you take, including prescription and over-the-counter medicines

• Your medicines

• Medical supplies needed to take your medicines, like syringes, needles, inhalers, pumps, batteries, tubing, alcohol pads, dressings

• Portable blood pressure monitor

• Thermometer

The overall goal of your treatment is to improve your symptoms and sometimes to slow the progression of your PH.

In addition, setting personal treatment goals with your doctor is an important step in participating in your care.

Setting realistic personal treatment goals may help you improve your symptoms or keep them from getting worse. Personal goals may be about things like exercise, diet, work, travel or participation in activities.

Some form and amount of exercise is usually considered important for physical and mental health.

For patients with PH, experts generally agree that some exercise is not harmful, and may even be beneficial.

Finding the right balance between too little and too much exercise is an important way to help control your symptoms.

You should talk to your doctor about what kinds and how much exercise is right for you before you continue or begin an exercise program.

You should watch how much salt and sodium is in the foods you eat because too much salt or sodium can cause edema (the build-up of water in tissues), which makes your heart work harder. This can make your symptoms worse. Talk to your doctor or a dietician about how to control salt and sodium in your diet to a safe level for you.

Some vitamins, minerals, and herbal supplements can interfere with some medicines. Talk to your doctor or a dietician about which ones you can take and which ones to avoid.

Asking questions will help you take a more active role in your PH treatment.

• Can we talk about my treatment goals?

• What happens if my PH gets worse?

• When should I call you, or go to the emergency department?

• Can I exercise, how much?

• Do I need to avoid certain foods?