Early on, pulmonary arterial hypertension (PAH) doesn’t typically cause symptoms. However, many people experience symptoms as the disease worsens. One common symptom is edema (swelling).
It’s important for people with PAH to learn about swelling and understand what it means. Experiencing this symptom may signal that your condition is progressing or getting worse. Certain diet changes and medications can prevent edema, reduce swelling, and improve your quality of life.
Read on for 10 things to know about swelling and PAH.
There are several possible ways edema can show up:
If you don’t treat swelling, it could lead to more serious problems like pain, stiffness, trouble walking, scarring, infection, or skin ulcers.
Many members of myPHteam, the social network for people with pulmonary hypertension, have discussed swelling. “Whenever I have swelling in my feet or lower legs, they start to itch,” wrote one member. “The itching is so intense that it drives me insane.” Another said, “Although I have a mild case of PAH, my symptoms at times are pretty bad. I battle frequently with my legs and feet swelling from retaining fluids.”
Fluid buildup is a potential PAH symptom for all groups of people. However, this symptom may be especially important for African Americans to be aware of. This group gets connective tissue disease-associated PAH at higher rates and at younger ages.
Researchers and doctors are increasingly recognizing that there are inequalities in health care that make it harder for certain groups to get diagnosed and access treatment. As this issue becomes more widely understood, experts are working to develop solutions that lessen these inequalities.
In the meantime, be aware that swelling can be a sign of a serious problem, especially for African Americans.
Swelling may be a sign of PAH or type of another heart and lung disease. As the disease progresses, your heart may have a harder time pumping blood, which will affect levels of blood flow around the body.
At some point, the right ventricle (the chamber on the bottom right side of the heart) stops working correctly, and the heart muscle can’t pump enough blood to the kidneys — the organs responsible for controlling fluid levels in your body. As a result, fluid builds up in different tissues and areas of the body.
Other problems that can develop due to swelling caused by heart failure include:
“The PAH led to heart failure, and my heart doesn’t pump enough to handle all of the fluid,” explained one member. “This overload worked against my kidneys and liver, leading to both being damaged. It’s a domino effect.”
If you experience swelling, your doctor may perform an exam, ask about your family history, and run blood tests to look for potential problems.
Some tests can help your doctor get a better look at your heart. An echocardiogram helps your doctor visualize how your heart’s working and see if it’s under too much strain. An electrocardiogram (ECG) shows your heart’s electrical activity. Right heart catheterization is a procedure that allows your doctor to directly measure blood pressure in your lungs’ blood vessels. These tests can also help a doctor diagnose any underlying conditions that are causing the swelling.
There are several different types of PAH, a form of pulmonary hypertension:
Some drugs lead to swelling as a side effect. Stopping these medications may help reduce or prevent fluid retention. Ask your doctor before stopping any medications to make sure that it’s safe to do so.
Medications that may contribute to edema include:
Some PAH treatment options may also cause swelling. Endothelin receptor antagonists (ERAs) — medications that widen blood vessels and keep PAH from getting worse too quickly — often cause fluid to build up. However, other PAH treatments like phosphodiesterase-5 (PDE-5) inhibitors or soluble guanylate cyclase stimulators (SGCS) are less likely to cause swelling.
In some cases, swelling is caused by other health conditions such as:
Managing these medical conditions may help reduce swelling. Treating your PAH may also reduce edema and other symptoms, such as chest pain, tiredness, or a fast heart rate.
If you’re dealing with edema, your body is not getting rid of extra fluid quickly enough. Taking in less fluids can help with this issue.
Experts recommend that people with PAH and heart failure drink between 1.5 and 2 liters per day to prevent edema. This is about the same as 6.5 to 8 servings of fluids per day, where one serving is 1 cup or 8 ounces of liquid. If you have already been diagnosed with edema, you may need to further reduce your fluid intake.
“I am supposed to be limiting my fluid intake because I am in heart failure,” commented one member. “When you have been in the habit of the more water the better, it is hard to break that cycle.”
Any liquids you drink, including water, coffee, tea, soda, and juice, count toward your daily total. Other items like ice, soup, and Jell-O should also be counted as fluids.
The more salt (sodium) you eat, the more fluid your body holds on to. High-salt foods can worsen fluid buildup in your body.
Experts say that people with PAH and heart failure should eat less salt. Some guidelines suggest getting less than 2 grams of sodium per day (less than 2,000 milligrams), although your doctor may make other recommendations.
Check the labels of the foods you eat to determine how much sodium is in one serving. To eat less salt, you may want to try tips like:
Members of myPHteam have also offered tips. “Mrsdash.com has a meal-planning section for a no-salt diet,” suggested a member. “I am going to meet with a dietitian next week,” said another.
When diet changes don’t help, your doctor may recommend trying medications called diuretics or water pills. These drugs help your body get rid of extra water, so they are a common option for treating edema.
Loop diuretics such as furosemide (Lasix), thiazide diuretics like metolazone (Zaroxolyn), or potassium-sparing aldosterone antagonists like spironolactone (Aldactone) may all be options.
These medications have been successful for many myPHteam members. “I am on spironolactone to help rid my body of liquid, and I must say it works well,” one member commented. Another wrote, “The Lasix seems to be keeping the swelling at bay.”
When taking diuretics, watch for signs of dehydration, like thirst, dry skin, chapped lips, tiredness, dizziness, or itchiness. Your doctor may want you to take a smaller dose if diuretics make you too dehydrated. The medications could also lead to other side effects like headaches, muscle cramps, or high blood sugar levels.
Edema can be serious or even life-threatening, so it’s essential to address it right away. Tell your doctor if you gain a few pounds within a single day or if you gain weight a couple of days in a row.
“My cardiologist told me to weigh myself each day at the same time and keep a chart,” mentioned one member. “Keep an eye on your swelling,” another member recommended. “That and other issues put me in the hospital for five days with congestive heart failure. Please be aware if the swelling worsens, call your pulmonologist.”
On myPHteam, the social network for people with pulmonary hypertension and their loved ones, more than 49,000 members come together to ask questions, give advice, and share their stories with others who understand life with pulmonary hypertension.
Have you been struggling with swelling while living with PAH? What have you done to manage it? Share your experience in the comments below, or start a conversation by posting on your Activities page.