My life was changed forever on January 8th, 2007 – seven years ago today – the day I was diagnosed with several massive DVT’s and told I would likely not make it through the night.  I was 18 at the time, home on Christmas break after my first semester away at college.  It is now 7 years later and it is still difficult to look back at that day.

I had  my tonsils taken out 2 weeks before my diagnosis of DVT.  The surgery went great.  I made it through recovery without my stitches breaking open or any kind of infection – the postoperative complications doctors warned me about.  Although I had spent Christmas and New Years resting at home on the couch, unable to talk or eat, I was looking forward to a healthy 2011.

As my throat started recovering, I started experiencing a dull pain in my back.  I still remember joking around with my mom about the intense work out I must have gotten on the couch because I was so sore.  Even though I insisted the pain was from spending 10 days sleeping on the couch during my recovery, my always-cautious parents called the surgeon to report the aching pain that was slowly getting worse.  It was dismissed as sciatica.  I was told, like so many other patients who have an undetected DVT, to resume normal activity and take something for the pain.

Unfortunately, as the week passed, it became impossible to do anything but lay in bed.  Every move I made led to excoriating, indescribable pain.  I laid in bed for days on end, not being able to sleep because the pain was so intense.  It was unbearable and day by day it only got that much worse.  Finally, I allowed my parents to take me to my primary care doctor to get checked out.  He sent me to my gynecologist as I had a history of ovarian issues.  She determined it to be a bladder infection and sent me home for the weekend with antibiotics.  This is the same doctor who several years earlier, despite countless trips to the hospital for abdominal pain, was unable to come up with a substantial diagnosis, blamed my “young ovaries” and put me on birth control.

As Monday slowly rolled around, I was unable to get out of bed.  Even to walk 15 feet from my bed to the bathroom became impossible.  My family called my primary care again who was outraged that my gynecologist did not look into this further.  He set me up with an emergency CT scan and said he would be in touch as soon as he got the results.

Once I was done with the CT scan, a group of techs cautiously helped me walk out to the waiting room and told my dad and I that I was not to leave until they contacted the doctor.  I knew it was something serious when I picked up the call and the doctor asked me to give the phone to my dad.  I had no idea that my life was about to change forever.   He told my dad they found several massive blood clots and that I needed to be rushed to the hospital right away.  I remember thinking on the ride there – “A blood clot?  That’s no big deal, they must be able to remove that” but when there was a team of doctors waiting for me at the door upon my arrival I knew the situation was much more serious.  They immediately put me on a stretcher and started drawing an absurd amount of blood, pumping me with painkillers and blood thinners and begging me not to move.  It quickly became clear that one wrong move could kill me.  I had no idea what was going on and it became obvious that the doctors didn’t either.  They had never seen such extensive, calcified clots in someone so young and otherwise healthy.  They found several DVT’s in my left leg that ran behind my knee, through my thigh and into my abdomen, blocking all blood flow to that part of my body.  They explained to my family that they were not sure if I would be making it out the hospital alive as these clots were in the veins that led directly to my heart and lungs.

I spent the next 10 days in the hospital hearing a ton of theories as to why this could have happened.  Every time I saw a family member or friend who came to visit I thought it could be the last time I ever got to see them.  I stayed awake through the nights in fear that if the clots moved to my lungs in my sleep I wouldn’t wake up to yell for help.  I would think about all the things I would miss out on- graduating college, getting married, having children.  It was these thoughts that kept me awake night after night.  No one, especially an 18 year old girl should have to experience this kind of paralyzing fear because of something that was completely preventable.  Looking back I had so many of the symptoms and risk factors of DVT but no one ever thought twice about a blood clot given my age.

Because these clots were so extensive, experts in the field predict they must have started 10 years prior to my actual diagnosis.  The pain I had been experiencing as a young preteen was not related to my ovaries but were the developing blood clots.  Instead of my doctor trying to figure out why I was experiencing this very specific pain she dismissed the issue and put me on birth control, which we now know only fueled the clots.  On top of that I tested positive for 2 clotting disorders during my hospitalization– Factor V Leiden and Antiphospholipid Syndrome.

I was lucky enough that somehow, still unexplainably, these clots never moved to my lungs, heart or even brain.  While I am forever grateful that they didn’t, I continue to live in fear as these clots still and always will remain in my leg as doctors are unable to do anything to remove them.  Adjusting to life after my diagnosis was the hardest part of this experience.  Not only was I left barely able to walk but I was eventually diagnosed with PTSD from the experience, something that I’ve found many survivors of DVT/PE experience after they are diagnosed.   As far as my health goes, I will never have peace of mind, something that I had previously taken completely for granted.  We hear about Post Thrombotic Syndrome quite often in these conversations but the psychological and emotional effects are rarely discussed.  If you are experiencing similar feelings – please know that you are not alone.

Nearly 7 years after my first diagnosis and my first full year without developing a new clot since, I feel healthier than I could have ever imagined possible both emotionally and physically although there are days I continue to struggle with both.  The more time passes the more surreal it is to look back at those dark days, as I would have never believed that I’d be where I am today.  Even though I was originally told I would not be able to return to college and would not graduate on time I accomplished both.  I now work in healthcare and continue to advocate nationally for DVT awareness and prevention specifically in teenagers and young adults.  I was able to turn this nightmare into something extremely positive but unfortunately there are hundreds of thousands of people per year that are unable to speak for themselves because their lives have been stolen due to complications from DVT.  I continue to tell my story for those who are unable to tell theirs including my cousin Justine Sperbeck who passed away suddenly this past August from DVT/PE.

DVT can be prevented.  Most importantly, know your risk factors and your family history.  Know the warning signs and symptoms.  Be your own advocate.  Enjoy every single second you have here on this earth because there is no way of knowing when it will be taken away from you or someone you love.

A short documentary on my story done by the CDC/VDF/Spirit of Women for the “This Is Serious” Campaign for DVT/PE Awareness:

You can also view and share Caitlin’s story (above) via youtube directly. Or watch the complete This Is Serious: Learn about Women and DVT video campaign, featuring three patient stories, including Caitlin’s.

Be sure to connect with Caitlin in the comments below.

Thank you, Caitlin, for sharing your story with BCRN and for passing on Justine’s memory to each of us, our thoughts are with you.