If you live with pulmonary hypertension (PH), you may have noticed that by the end of the day, your feet feel painful and swollen. Or perhaps you’ve noticed your abdomen becoming swollen and noticeably larger.

Fluid retention in the belly (ascites) and an accumulation of fluid in the hands and feet (peripheral edema) are common symptoms of pulmonary hypertension. Signs of fluid retention, or edema, can include puffiness, weight gain, shiny skin, a swollen abdomen, and skin that stays indented when pressed (pitting). If left untreated, fluid retention from PH can worsen, making it hard to walk, causing stiffness, and increasing the risk of skin ulcers and infections.

While water retention and swelling don’t cause high blood pressure, they are signs of high pulmonary blood pressure (elevated blood pressure between the heart and lungs) and a possible complication of pulmonary hypertension. This article will explain why swelling occurs in PH and what you can do to manage it.

What Does Water Retention Feel Like?

Many members of myPHteam have asked questions about living with symptoms of PH, including swelling. One member shared, “I’ve been having increased edema in both feet. I’m watching my sodium intake, but the edema doesn’t completely go away. I also elevate my legs often, and my doctor has increased my Lasix. Has anyone else experienced this or have advice?”

Another member asked, “I suffer from edema in my ankles, and my abdomen is distended. Does anyone know why?”

To understand why fluid retention is so common in PH, it’s important to know how PH affects the circulatory system.

Causes of Swelling in Pulmonary Hypertension

To understand why swelling happens in PH, it’s helpful to know how the heart and blood vessels work. The right side of the heart receives deoxygenated blood from the body and pumps it to the lungs, where the blood gets reoxygenated.

In all forms of pulmonary hypertension, there is high blood pressure between the heart and lungs. Over time, this added pressure can weaken the right side of the heart, which could cause congestive heart failure.

In one type of PH called pulmonary arterial hypertension, the blood vessels connecting the heart to the lungs are too narrow and stiff. This leads to a buildup of pressure (hypertension) that slows down blood flow. The question is, does this high pulmonary blood pressure cause water retention?

How Does High Pulmonary Blood Pressure Cause Swelling?

When the right side of the heart is weak and the blood pressure in the pulmonary arteries is high, the heart can’t pump all the blood it receives from the veins. Instead, the veins that lead to the heart’s right side become flooded by a backup of unpumped blood, causing fluid to leak into the surrounding tissues. Gravity pulls this fluid from the smallest blood vessels (capillaries) toward the lower limbs, potentially causing swelling in the feet and ankles, which is common in people with PH.

Heart failure on the right side can also cause a condition called congestive hepatopathy, where blood backs up in the liver. This causes fluid to pool in the abdomen, adding pressure to the abdomen and making it appear bloated.

Managing and Treating Fluid Retention

Most people with fluid retention from PH are advised to limit their fluid and sodium intake. In mild cases of swelling (peripheral edema), wearing compression stockings and elevating the feet above heart level can be helpful. Diuretics, or “water pills,” which are commonly prescribed to help the body get rid of excess sodium and water, may also be used to get rid of extra fluid in the body.

Members of myPHteam have shared their real-life experiences with these treatments. For example, one member offered this advice on managing edema: “You should ask your doctor for water pills. Also, really watch your salt intake! I’m on Lasix and spironolactone. I have no more swelling. Keep your feet elevated!”

Restrict Your Sodium Consumption

Sodium increases the body’s overall blood volume through several mechanisms, including pulling water into the bloodstream. As blood volume rises, so does pulmonary blood pressure.

Keeping pulmonary blood pressure down is crucial for people with PH, as any extra pressure can strain the right side of the heart, lead to more fluid retention, and speed up heart failure and heart disease. That’s why people with PH are advised to follow a low-sodium diet, limiting sodium intake to no more than 2 grams per day.

Here are some tips for reducing sodium in your diet:

• Buy unsalted nuts and nut butter.
• Choose fresh poultry, beef, and seafood rather than cold cuts or cured or processed meats.
• Cook your meals at home instead of getting takeout or eating at restaurants.
• Fill your plate with fresh or cooked vegetables, prepared without added salt.
• Experiment with herbs and spices instead of adding salt to recipes.
• Look for packaged foods labeled “no salt added.”
• Use dried beans instead of canned ones.
• Snack on fresh or frozen fruit.
• Be cautious with high-sodium condiments and marinades. Use oil, vinegar, garlic, herbs, and lemon or lime juice instead.

Monitor Your Fluid Intake

Your doctor may set a limit for your daily fluid intake, typically no more than 2 liters per day (and at least 1 liter per day) to prevent dehydration and kidney failure. These recommendations may vary depending on your health status.

To help stay within your fluid limits, be mindful of the amount of excess fluid you consume from the following sources:

• Gelatin
• Popsicles
• Sherbet
• Soups
• Water and other beverages
• Water taken with pills

Keeping notes on your fluid and sodium intake will help you to stay on target. Weighing yourself daily — preferably in the morning before eating or drinking — can also alert you to sudden weight changes that might indicate fluid retention.

Try Diuretics if Prescribed by Your Health Care Provider

If watching your fluid and sodium intake isn’t enough to control swelling, your doctor may prescribe diuretics. These medications help your body eliminate excess fluid. Although diuretics can provide quick results, these medications come with risks and potential side effects. While you’re taking diuretics, your health care provider will monitor you closely for signs of kidney disease, electrolyte imbalances, and dehydration.

When To Call Your Doctor

You should contact your health care provider if you experience:

• A sudden weight gain of 3 to 5 pounds in a single day or steady weight gain over several days
• Edema that makes it hard to move or causes significant discomfort. Contact your doctor immediately if this happens.
• Signs of infection, such as a fever. Fluid retention can cause the skin to stretch, making it more prone to infection, so talk to your doctor at the first sign of a fever.

Talk With Others Who Understand

On myPHteam, the social network for people with pulmonary hypertension and their loved ones, more than 56,000 members come together to ask questions, give advice, and share their stories with others who understand life with pulmonary hypertension.

Are you living with pulmonary hypertension? Has swelling been an issue for you? Share your story in the comments below, or start a conversation by posting on your Activities page.