What do I need to know?
If you have experienced deep vein thrombosis (DVT) or pulmonary embolism (PE), there are many things you need to know.
1. Information is available
Know there are resources which can help you better understand and manage your condition. You may wish to begin with:
- A comprehensive 28 page educational brochure covering common issues related to diagnosis, treatment and the prevention of complications: "Deep vein thrombosis (DVT) and pulmonary embolism (PE): Information for newly diagnosed patients".
- A 3 page educational handout covering common questions related to recovery and treatment, including a comparison of oral anticoagulant options: "A Patient's Guide to Recovery after Deep Vein Thrombosis (DVT) or Pulmonary Embolism (PE)".
- You may also wish to review our Frequently Asked Questions page for common concerns.
2. Length of treatment
Know how long you should be treated with a blood thinner. Length of treatment can vary from a few months to long-term over many years and is determined by factors your doctor will discuss with you. If you don't know your treatment plan, ask: 'How long should I be on a blood thinner?'.
3. Know about your blood thinning medication.
There are multiple blood thinners, both injectible and oral. A comparison of oral blood thinners is available to help you discuss options with your doctor.
If you take Coumadin® (warfarin):
Know your target INR
Know what your target level of blood thinning (INR) should be.
Vitamin K foods and warfarin
Know that foods containing Vitamin K can influence warfarin and learn the implications this has for your diet. Be aware that you should eat relatively even amounts of vitamin K containing foods throughout the week. It is not necessary to avoid them altogether. Rather, consistency is key.
Medications and warfarin
Know that many medications can influence the blood thinning effect of warfarin (Coumadin®). If you start or stop a medication, consult with your doctor about getting an INR check approximately 3 to 5 days after the change and again in another 7 to 10 days to ensure your INR is stable.
Home INR testing
Know that self-testing with an INR home-monitor is possible. Such testing is reliable and often reimbursed by insurance companies. Learn more about home INR testing and ask your doctor if you are a candidate for home monitoring.
If you take Eliquis® (apixaban), Pradaxa® (dabigatran), or Xarelto® (rivaroxaban):
Understand how to take the medication correctly
- Should the drug should be taken with or without food?
- How often should it be taken? (for example, once a day or twice a day)
- Should it be taken at a particular time of day?
- What do I do if I miss a dose?
4. Know how to recognize abnormal bleeding
All blood thinners increase bleeding risk. Know the signs and symptoms of bleeding.
5. Keep follow-up appointments. Review your treatment plan annually.
If you are on a blood thinning medication (anticoagulant) long-term, review with your doctor each year whether continuation is still the right thing to do. Have a dialogue with your doctor which reviews how well you have tolerated therapy and what new published research studies might influence your treatment plan.
6. Compression stockings
Know that compression stockings (when individually fitted) may make your leg feel better. They are beneficial to treat long-term leg pain and swelling that sometimes follows DVT. A detailed guide to compression stocking use after DVT is available.
7. Medical care and support
Know what medical center and what doctor to turn to for state-of-the-art medical treatment and advice. There are unfortunately very few in-person local support groups for persons affected by blood clots, but be sure to ask your doctor if any are available in your area. We have complied a list of support resources.
For women of childbearing age who have experienced clots: For most women, it is safe to get pregnant again, but special blood-thinning treatment may be needed during pregnancy. Consult with your doctor about clot prevention during pregnancy.
9. Clinical trials
Consider participating in a clinical research study. Greater participation in clinical trials means faster answers to research questions, which can lead to better diagnosis and treatment options for persons affected by blood clots and clotting disorders.
10. Symptoms and risk factors
If you have experienced a blood clot, you are at higher risk for developing a future clot. Know your risk factors and the symptoms of DVT and pulmonary embolism. Be aware that the symptoms of a future clot may not be identical in presentation to what you experienced in the past. If you suspect a clot, don't delay in seeking medical care.
Deep Vein Thrombosis (DVT):
A clot that typically is in one leg (can also occur in unusual sites, such as veins in the arm, abdomen or around the brain). Symptoms range from mild to severe; may involve the foot, ankle, calf, whole leg or arm. The classic symptoms are:
- Discoloration (bluish or reddish)
Pulmonary Embolism (PE):
A blood clot in the lungs. The classic symptoms are:
- Shortness of breath
- Chest pain (may be worse with deep breath)
- Unexplained cough (may cough up blood)
- Unexplained rapid heart rate
Know your risk for clots is increased if you...
- have major surgery or trauma
- are hospitalized
- are overweight
- are immobile
- are on birth control pill, patch or ring
- are on hormone replacement therapy
- are pregnant
- have a family history of deep vein thrombosis or pulmonary embolisms
- have an inherited or acquired blood clotting disorder
- have cancer
- have an inflammatory disorder, such as lupus, rheumatoid arthritis, inflammatory bowel disease
A more detailed discussion of symptoms, including subtle symptoms can be found on the Clot Connect patient blog.
A series of videos for patients called "DVT and PE: What Patients Need to Know" can be found on this website here.Clot Connect has a comprehensive brochure, "Deep vein thrombosis (DVT) and Pulmonary embolism (PE): Information for newly diagnosed patients", found here.