Living with DVT/Blood Clots

While PE can be life-threatening, patients commonly survive the initial event and need to learn how to live with the risk of recurrence. Anticoagulation (blood thinners) remains the mainstay of therapy, and may be needed for as little as three months, but can be lifelong treatment. The length of treatment depends on the underlying cause. Appropriate caution must be taken due to the bleeding risk when on anticoagulants. Regular follow up should occur with the patient’s physician. During this time, depending on the type of treatment you receive, regular blood tests may be required.

What to Expect

Post-thrombotic syndrome (PTS), can be a long-term complication, of patients after a DVT. Often, the more severe and extensive the DVT is, the greater likelihood of developing PTS. However, many patients can completely recover even after massive DVT without other complications. Symptoms of PTS from the clot in the leg can include swelling, pain, aching, heaviness, and cramping. To prevent PTS, physicians may often prescribe compression stockings to help decrease swelling. If your physician does prescribe these for you, be sure to follow their instructions, even if the stockings are not the most attractive piece of clothing that you own. Your physician may also advise you to keep your feet elevated whenever possible.

Pulmonary hypertension is a rare complication that can occur in some patients after PE. The majority of pulmonary embolisms eventually go away. However, sometimes the PE process leads to an increase in the blood pressure in the pulmonary artery. The pulmonary artery blood pressure is usually measured with an echocardiogram (ultrasound of heart). Your physician may order this test to evaluate your pulmonary artery pressure, especially if you have worsening shortness of breath despite treatment with anticoagulants.

Managing DVT/Blood Clots

Your physician may complete a "hypercoagulability" evaluation on you at some point after your diagnosis. This could include a number of blood tests looking for a genetic cause. However, this can depend on the cause of your blood clot, especially if there is not an obvious cause (such as surgery, prolonged travel, etc.) There is currently no good way to assess the risk of having another DVT.

In the rare circumstances in which blood thinners cannot be used or do not seem to be working, your physician may suggest an inferior vena cava (IVC) filter. The filter is surgically inserted inside a large vein called the vena cava. The filter catches blood clots from the legs before they travel to the lungs, which prevents pulmonary embolism. However, the filter doesn't stop new blood clots from forming. If your physician suggests this as an appropriate device for you, be sure to have an in-depth discussion to fully understand the risks and benefits.

After a DVT, especially if there is no identifiable risk factor, your physician may recommend a number of tests to search for other health conditions. 

Finding Support

There are many resources available to patients looking for more information. Some include:

• National Blood Clot Alliance
• MedlinePlus