When you’re diagnosed with a lung disease, you expect traditional respiratory symptoms. Shortness of breath and shallow breathing, wheezing, a dry cough, chest tightness—these are the signs you expect to see, whether you’re dealing with a chest cold, chronic asthma or a progressive disease like pulmonary fibrosis. But these symptoms are just the tip of the iceberg. Symptoms of respiratory dysfunction also include fatigue, weight loss, nausea, joint pain and muscle aches. Those with idiopathic pulmonary fibrosis (IPF) often present with fingernail clubbing, which is a common symptom of some chronic diseases. Another of these unexpected symptoms is edema.

What Is Edema?

Edema is the clinical name for swelling caused by excess fluid in your body tissues. It happens throughout your body and for most people in most situations, it’s not a big deal. Bust your knee on the front steps? You’ll likely have a swollen scrape for a few days. Bitten by a mosquito? Try not to scratch that itchy, raised bump on your arm. Bite your cheek instead of your pizza slice? That puffy spot you can feel with your tongue is edema. This swelling occurs when fluids leak out of capillaries into the surrounding tissue. Usually, this occurs as a response to an injury or illness. It’s called an immune response and it’s completely natural. It’s the body’s way of flooding the area with cells that can kill invaders and heal damage. It can also happen in situations where your blood pressure is thrown off-kilter. Your feet might swell if you’re sitting for long periods of time, like on a trans-Atlantic flight. Your fingers might swell if you eat too much salty food, making it tough to slide rings on and off. There are a variety of medical conditions that can cause edema. Congestive heart failure, blood pressure problems, kidney disease and liver disease can cause swelling in different parts of the body. Pulmonary fibrosis often causes edema in the legs.

How Are Pulmonary Fibrosis and Edema Related?

At least one-third of patients with idiopathic pulmonary fibrosis have hypertension. In some studies, that number has been found to be as high as 85 percent. Pulmonary fibrosis and edema are related because of this complication. Hypertension, or high blood pressure, in IPF patients is caused by the build-up of scar tissue between the alveoli and the capillaries, in the lungs. As pulmonary fibrosis progresses, the wall between the air sacs and the blood vessels in the lungs thickens. That makes it harder for oxygen to enter the bloodstream and carbon dioxide to exit the body. doctor showing lungs x-ray When sufficient gas exchange does not happen, the heart pushes more blood to ensure oxygenation. The right side of the heart gradually weakens as it has to work harder to pump blood through fewer blood vessels. The right side of the heart eventually starts pumping less blood.  As a means of compensating, the brain releases hormones that prompt the kidneys to retain salt and water.  As this process progresses, you slowly retain more and more fluid. All of this is a recipe for increased blood pressure in the heart and lungs. Called pulmonary hypertension, it also creates swelling in the parts of the body that are farthest from the lungs, which would be an IPF patient’s legs.

How to Treat Edema with Pulmonary Fibrosis

When it comes to pulmonary fibrosis and edema, there’s no instant solution. You can’t just suck out the excess fluid and go on with your day. Your pulmonary fibrosis treatment should address your pulmonary hypertension and, consequently, your leg swelling. You can also add medications to your treatment plan that specifically address the edema in your legs. Diuretics and blood pressure drugs might be an option. Oxygen therapy, dietary changes and other lifestyle alterations can also help with swollen legs. doctor listening to senior patient Note: If you haven’t been diagnosed with pulmonary fibrosis and aren’t currently seeing a pulmonologist, it’s time to get a referral from your GP. Leg swelling is a major warning sign for chronic heart and lung diseases, including PF. If you’re struggling with swollen legs, even if it seems minor or intermittent, you should talk with your healthcare team about ways you can address this symptom of pulmonary fibrosis. There are a variety of treatments and therapies that can increase your quality of life and help you return to your normal daily routine.

To connect with others who have or are impacted by PF: 

Join our online forum, and attend our virtual support groups on Zoom.

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  • anne tipping
    Posted on July 27, 2023 at 4:41 am

    interesting and informative i have been told that i have pf

    • PF NOW
      Posted on September 16, 2023 at 4:16 pm

      Hello Anne, thank you for reaching out. I’d like to welcome you to join our online community forum: https://www.facebook.com/groups/1198991686930106 This has over 3000 members impacted by PF and is a place where you can ask questions and reach out for support 24 x 7.


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