Having a DVT and PE Has Changed my Life: Nicole’s Story

Having a DVT and PE Has Changed my Life: Nicole’s Story

My experience with Deep Vein Thrombosis (DVT) and Pulmonary Embolism (PE) started in June 2011, three months after I got married and spent a three week honeymoon “road tripping” around New Zealand with my husband.

Late one night, I felt a twinge of pain behind my left knee.  I ignored it, figuring that I tweaked a muscle while running.  My pain grew worse and my left calf cramped on the following day.  I continued to ignore my pain, since I pride myself on being able to “tough it out.” One day later, my leg pain became even worse and my entire left leg cramped.  My foot was numb, and it felt as if it was on fire at times.  I work as an attorney and had a hectic day scheduled, so I told myself “if it is not better tomorrow, I’ll go to the doctor” and again just dealt with the pain.  The following day the pain was so excruciating that I drove straight to a walk-in clinic to get checked out.

When I got there, I still thought it was all in my head.  What could it possibly be?  I told the doctor my symptoms and the doctor immediately asked me about my breathing.  I was confused.  Did he not hear me say that my leg hurt?  But I started to think back, and realized that in the last three days I was often winded.  I informed him of a few instances when I noticed I wasn’t breathing as well as usual, and he immediately sent me to a hospital where they discovered I had a massive clot in my leg (deep vein thrombosis/DVT), and several clots in both lungs (pulmonary emboli/PE).  The DVT ran from my left mid-thigh down to my ankle.

The ER doctor said she was amazed I was still alive, and said that I was very fortunate I had not waited another day, as it could have been my last.  I spent the next two days in the hospital before I was released on low molecular weight heparin injections and warfarin under the supervision of my doctor.  I left the hospital on crutches because I could not put any weight on my leg.  I remained unable to use my leg for a few weeks, after which I could finally limp around.  It took over a month and a half to walk normally again, even though I still had pain.  I wear compression stockings, which help lessen my leg pain.

I was overwhelmed by the discovery that I had blood clots.  How could this happen to me?  I am thirty years old, healthy, active, a vegetarian, and have always been in good health, and did not take any medication, including those known to cause clots.  Why me?  What did I do to cause this?  Why did I get this?  It created a self-reflection of my life that I had never had.  It was hard to comfort myself and I was often frustrated and angry, despite being thankful to be alive.

The toughest part for me is that, to date, the doctors have no explanation as to why I had a DVT and PE.  All of the standard causes do not apply to me and none of the tests reveal that I have a blood clotting disorder that makes me prone to clotting.  A couple doctors think that maybe my New Zealand travels caused me to develop clots, but others feel that the trip was too long ago to be the cause.

I still have leg pain and swelling, and am still taking warfarin. The latest scans reveal that my clots are gone, and my lungs are clear, so that is encouraging.

Having a DVT and PE has changed my life a lot. Prior to developing clots, I was an avid equestrian, I rode my scooter to work, biked, rode a motorcycle, and was always active.  Now I have to limit or avoid activities that could cause trauma due to the risk of bleeding associated with blood thinners.  I realize that wearing a helmet is important in case of injury.

On the other hand, my DVT and PE have positively changed the way I view life.  I used to sweat the small stuff, and have come to realize it is all small stuff.  I devoted so much time and energy to things I did not enjoy or things that I now know do not matter.  I now realize that we all have only one life to live, and we need to live it to the fullest because it can be taken from you in a moment.  I find more appreciation of what really matters: time, health, family, and those I love and care for.  I have found a lot of meaning in my life and regret that it took a DVT and PE to spark it.  I am working to spread awareness about how either can happen to anyone, healthy or not, young or old, at anytime.  And I know that I will persevere, despite having DVT and PE.

Take Home Messages

  • Blood clots can occur without any readily identifiable cause.
  • Seek medical help as early as possible for symptoms (pain and numbness) that do not go away, most especially for shortness of breath (feeling winded in this story).
  • Positive insights can be an outcome of a life-threatening event.
Share your story
The personal story is intended for informational purposes only. The National Blood Clot Alliance (NBCA) holds the rights to all content that appears on its website. The use by another organization or online group of any content on NBCA’s website, including patient stories that appear here, does not imply that NBCA is connected to these other organizations or groups or condones or endorses their work. Please contact info@stoptheclot.org with questions about this matter.

Additional patient stories


Hope Galley

Hope's Story of Blood Clots as a Warning Sign for Cancer