Basic Information:

Q – How can I best care for myself?
A – The most valuable things you do to care for yourself are quite simple.

1. Stay anti-coagulated using the medication prescribed by your doctor.  If you are taking warfarin, make sure your blood clotting capacity is regulated by an anti-coagulation clinic or an INR home monitoring device.
2. Maintain a program of regular exercise.
3. If compression stockings have been prescribed, wear them regularly except when sleeping.
4. Eat a healthy, low cholesterol diet and maintain an appropriate weight.
5. Do not smoke.
6. Learn about drug and food interactions with warfarin and ask your health care provider if you are unsure.
7. Severely restrict alcohol intake to avoid drastic changes in the INR.

Q – What is an INR?
A – INR (international normalized ratio) is a measure of the time it takes for clotting to occur.  Regular INR monitoring is required for patients being treated with warfarin.

Q – If I am on anticoagulant, what precautions should I take?
A – It is important to prevent injuries that could cause internal bleeding, especially head injuries that could cause bleeding into the brain.  Avoid contact sports and downhill skiing.  Wear a medical bracelet that announces that you are on blood thinners, so if you are in an accident and unconscious, you will receive the correct emergency treatment.

Q – What should I do if I have swelling and pain in my leg or I have severe shortness of breath and I suspect that I have developed another blood clot?
A – See your doctor or go to an emergency room.  You will eventually learn how to read your symptoms, but it is always better to discover you are healthy than to ignore a potentially dangerous warning sign.

Q – I have heard that airplane flights are linked to DVT and PE.  Can I fly safely?
A – The answer in most cases is yes.  If you are properly anti-coagulated with an INR of 2 to 3, your chances of developing a clot are much lower than the average person.  Staying hydrated, avoiding alcohol, and, if possible, getting up every hour or two to walk around will also help prevent clots.  If you are unable to get up and walk, leg exercise, such as moving your feet back and forth and bending your knees, can be performed.  Wearing fitted vascular compression stockings can also reduce the clotting risk.

Q – Since I developed a PE, I’ve had occasional anxiety attacks that mimic some of the symptoms of PE.  What can I do about this?
A – Some patients do experience anxiety and it is worth acknowledging.  Maintaining a proactive plan for wellness is the first step.  Join a support group that provides you with companionship of fellow patients and learning from caring professionals.  Notice conditions that are stressful for your body such as lack of sleep, or stressful work environment, and change those circumstances to create more comfort for yourself.  Accepting your challenges and working with them will be more productive than denying or rejecting them.

Q – What can I do to help others avoid DVT and PE?
A – There are many things that you can do which will spread awareness and make it less likely that someone else will suffer from blood clots.

1. Learn what the risk factors are
2. Learn how to prevent blood clots
3. Share what you have learned with others

Please click here to view a Special Report from the U.S. Department of Health & Human Services: "Staying Active & Healthy with Blood Thinners".

"For me the support group helped a lot early on.  My doctor was helpful too, and of course time was a big help in calming my fears.  After a second episode I did seek some professional counseling and needed some medication."

"The most helpful choice I have made for myself was not to settle for the advice of one doctor, but to take charge of my own cure."

"My near fatal experience with VTE changed our lives completely.  Both my children suffered anxiety, being told I wouldn't live.  They were rushed to the hospital hoping to make it in time to say goodbye.  There they were faced with the frightening scene of seeing me hooked up to so many machines, tubes down my throat... and not responding to them as they cried to me... As I lied there though, I DID hear them!"

"When I came home, my 9-year-old son had to sleep with his cell phone, afraid that if something was to happen again, he could respond quickly.  The anxiety of it was so much for him that he now is living with his father, my ex-husband... We are still extremely close and spend lots of time together, but he and his father stay active with every sport imaginable and I am very happy for him."

"My teenage daughter also suffered anxiety, scared by the sound of a cough, a strange noise, anything would scare her at first... then… she resented me.  What had happened changed her life and taken away some of her freedom.  It took several months before we could get our friendship back.  On one level, this is normal for a teenage girl, but I know that this was too much for a girl of her age to have to deal with."

"Immediately after my VTE, my father would cry at anything.  Certain movies or TV shows we couldn't watch anymore were too intense or too hard for us to watch.  Too graphic or too negative types of shows were too hard to watch.  Now all we want are positive and uplifting shows.  Still to this day it is that way."

"Hearing people complain about ‘little things’ sometimes sets you off.... Today, I am grateful for those little things, I rarely complain about anything, and the things I do complain about, are definitely NOT little...  The hardest part is, the flashbacks of the last 30 seconds before I went into cardiac arrest... the knowing I was going to die.  The panic of not being able to say goodbye to the ones I loved and that fear of them not knowing.  I catch myself still to this day having that flashback all the time and just start crying.  It is the scariest moment of my life.  Because of it, I always speak how I feel.  I always tell those I care about, how I feel, and make sure they know how I love and care for them... as if that will be the last moment I share with them.  I live my life for ‘no regrets’ so if that time comes again, I won't have that ‘fear’..."

"I would hope that someone could bridge the language gap between doctor and patient! I feel sometimes like doctors are so entrenched in their medical world that they forget how scary something like this can be for someone who does not have a medical degree."

When anticoagulation is successfully achieved, the next phase of care begins.  Once DVT and PE patients are out of the hospital, they are likely to only need monthly monitoring by an anticoagulation clinic and annual checkups by a doctor.  Other than these check-ups however, patients are on their own to determine if they are well or not.  This can be a very challenging time for patients who often feel vulnerable and unsure of their capabilities.  Every small discomfort can be read either as a warning sign of a recurrence, or an unimportant event magnified by fear.  Some patients retreat into denial of their situation while others may struggle with anxiety or depression.

The most successful course of treatment for the patient is to take a proactive approach of self-education, and to learn from other patients and caregivers through support groups.  This learning will take time, but the benefits can be very significant to the quality of life for the patient.