Pulmonary hypertension (PH) is a condition in which the blood vessels between the heart and the lungs become narrow, causing high blood pressure in those arteries. Along with chest pain, heart palpitations, and fatigue, difficulty breathing is a common symptom of PH.

If you’re experiencing shortness of breath, here’s what to know about its role in PH, including why shortness of breath happens and how to work with your health care provider to help manage breathing troubles.

1. Difficulty Breathing May Be Mild, Moderate, or Severe

The shortness of breath associated with PH can be anywhere from moderate to severe. Some people experience trouble breathing only in certain situations, as one myPHteam member shared: “I get short of breath when bending over to pick something up.” Another said that they “have noticed that it is really hard to take a deep breath or walk very far outside in the cold air.”

Other people experience difficulty breathing more often. One member described “shortness of breath with slight movement,” for example. “Sometimes it goes away in a few minutes, but it usually stays for several hours. Sometimes I even wake up with it,” they said.

Breathing difficulties can affect different people in different ways, although this symptom often interferes with completing daily tasks and activities, such as feeling out of breath going up stairs. A member put it this way: “I have breathing problems mainly upon exertion or when getting out of our vehicle or shopping.”

Another member shared that they struggle with shortness of breath at home as well. “I get short of breath when I exert my energy to do chores or anything,” they said.

Breathing troubles can be scary, even if you know why it is happening. One member summed it up this way: “Sometimes it is terrifying because it feels like I am suffocating.”

2. Difficulty Breathing Is Related to Poor Blood Flow

Pulmonary hypertension causes the arteries running between the heart and lungs (the pulmonary arteries) to narrow, making it much more difficult for blood to flow through them. This narrowing and resistance of the vessels of the lungs causes high blood pressure in the pulmonary arteries. How does this high blood pressure lead to shortness of breath?

Shortness of breath in people with PH stems from issues with proper blood flow between the heart and lungs. Because of high blood pressure, the right side of the heart struggles to pump blood to the lungs, which is where the blood picks up oxygen before being pumped to the rest of the body. When there’s not enough oxygen in the blood, a person will feel out of breath, even if their lungs are bringing in plenty of air.

At first, breathing difficulties may be triggered only by certain situations, such as exertion, physical activity, or bending over. In more severe cases, you may feel short of breath even at rest.

3. Difficulty Breathing Is Usually the First Symptom of Pulmonary Hypertension

Shortness of breath is usually the first PH symptom, but more arise as lung disease progresses or gets worse. Other symptoms of pulmonary hypertension include:

• Chest pain or pressure
• Swelling in your legs, ankles, and stomach area
• Fatigue
• Dizziness or fainting
• Bluish or grayish lips or other areas of skin
• Pounding or racing heart
• Stomach pain and reduced appetite

People with PH may also experience general weakness or muscle weakness. “Does anyone else struggle with balance from leg weakness?” one myPHteam member asked.

“Yes, balance, light-headedness, and leg weakness were the first symptoms that I felt,” another member replied. “I have to take a big breath before standing up.”

If you experience sudden weakness or can’t move your arms or legs, call your local emergency number or go to the emergency department.

Breathing troubles can also interfere with sleep if you have PH. Sometimes people with PH also have a sleep disorder called obstructive sleep apnea, which impairs their body’s ability to get enough oxygen during sleep. Shortness of breath and fatigue may go hand in hand. “I didn’t sleep last night, and then I tried to sleep today,” wrote one member. “Had problems breathing, but at least I got a couple hours.”

Conditions such as chronic obstructive pulmonary disease (COPD), including chronic bronchitis and emphysema, and interstitial lung disease also may cause PH and difficulty breathing.

4. Pulmonary Hypertension Treatment Can Help You Breathe Better

Several types of PH treatment can help make the condition more manageable and alleviate symptoms like difficulty breathing. Talk to your health care provider to learn more about what options might work best for you.

Medication

Certain medications are used to help PH symptoms, including:

• Vasodilators (blood vessel dilators) — Open narrowed arteries and improve blood flow
• Anticoagulants (blood thinners) — Thin the blood and help prevent blood clots
• Calcium channel blockers — Relax blood vessels in the lungs, improving blood flow
• Diuretics (water pills) — Remove excess body fluid and decrease the load on the heart
• Medications — Help the heart beat more strongly

A cardiologist can help you find the right combination of medications to manage your symptoms.

Oxygen Therapy

Many people with PH who also have low blood levels of oxygen find that getting extra oxygen helps alleviate shortness of breath. Some people use oxygen therapy all the time, while others use it only when they need it. One myPHteam member said, “When I’m walking with oxygen and it gets harder to breathe, I stop and rest for a minute to get my oxygen saturation rates up again. Then I am good to go another 25 to 35 feet before I have to stop again.”

Other breathing machines also may help. For instance, people with PH and sleep apnea may wear a continuous positive airway pressure (CPAP) machine in bed to help them breathe at night. “I use a CPAP at night but no oxygen, as my rate only falls to about 80 upon exertion,” one member explained.

Breathing Exercises for Pulmonary Rehabilitation

If you’re eligible and your doctor thinks it would be helpful for you, pulmonary rehabilitation could give you the resources you need to manage your shortness of breath. “When I went through pulmonary rehab, they taught us how to breathe several ways,” noted a member of myPHteam.

Another wrote, “When I have a problem breathing, I sit and do pulse breathing. I breathe in and breathe out until my oxygen level goes up to at least 90, and then I do my work again.”

Pulmonary rehab may also include physical activity. “I don’t exercise very fast because I get so out of breath, but the rehab has helped. Even a little bit makes a difference,” one member shared.

5. Lifestyle Changes May Help You Breathe Better

Many doctors recommend lifestyle changes to help manage PH and its symptoms. These lifestyle changes include reducing common risk factors for pulmonary hypertension, such as by:

• Managing your diet and weight
• Quitting smoking
• Avoiding high altitudes
• Getting enough sleep
• Keeping your activity levels as high as your body will allow
• Avoiding saunas, hot tubs, and hot showers
• Seeing a doctor regularly
• Asking for help when you need it
• Getting all the vaccines your health care provider recommends for you

If you need help with making any of these changes, talk with your health care provider. They can suggest a healthy lifestyle plan to complement your treatment regimen, helping you manage difficulty breathing and other symptoms of pulmonary hypertension.

Connect With Others Who Understand

It’s easy to feel stressed and alone when dealing with pulmonary hypertension, but it may be easier with the support of others who understand. On myPHteam, the social network for those who live with PH every day, more than 51,000 members come together to ask questions, give advice, and share their experiences of life with pulmonary hypertension.

Have you experienced difficulty breathing with PH? What strategies have you tried to manage it? Share your experience and tips in the comments below or by posting on your Activities page.