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.
This is Justine
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.
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I am a cousin of Caitlin’s and the sister of Justine Sperbeck. I too had a PE (2 in my lung). I was 38 yrs. old when my occurred.
Thank you for stopping by, Michelle! I appreciate you taking the time to read and share. I am so sorry for the loss of Justine and your family has been in my thoughts ever since Caitlin contacted me about sharing her story. If you ever want to share yours or Justine’s, you are more than welcome to as well. I hope you are doing well and had a peaceful holiday. I know after losing my mother there is no way they ever go back to the way they were “before.” It’s so hard. Best to you and thank you again.
This story gave me chills. Thank you Caitlin for sharing and Sara for providing this platform.
And thank you for reading!
Caitlin and Justine are both distant cousins of mine. My mom has had to deal with DVT, Factor 5Leiden, and blood clots since she was in her 20’s. Please people, if anyone in your family has had this get tested for it! My siblings and I have been Factor5 tested. There is peace of mind in knowing and living accordingly.
Hi Pat. Thank you so much for being here. Thank you also for the message of awareness and the more we can talk about it, share it and tell stories like Caitlin’s and Justine’s, I hope we can continue getting the word out to more and more people. My best to you and your family as we enter a new year.
Thank you for sharing this story. I myself had multiple PE’s and a line of blood clots from my ankle to my mid-thigh. I have had numerous surgeries over my life including open heart surgery and it wasn’t until the blood clots that I was tested for FVL. My research has shown that millions of people have this but do not know. Do to my quick thinking doctors I’m still here today. I am a warfarin lifer have a IVC filter in place. Finding stories like this one is tragic however incouriging knowing there are others out there that have gone through what I have and can understand the fears and stress that I go through everyday. Thank you again.
Thank you for sharing your story with this community, Jeremiah! You said exactly what is so very frightening for myself and many others – “millions of people have this but do not know.” I, like many others, did not know something was even wrong until it was too late and that is why this is such a serious health concern. I am also glad to hear you had doctors that were able to help, find the problem and hopefully continue to provide you with treatment to prevent it from happening again. You are definitely not alone in what you are going through, as you know! Thank you again and please don’t be a stranger. Welcome!
Thank you for sharing your story. My 31 year old sister was just diagnosed with a clot this week. She is really having a difficult time. She found your story online. I hope this helps her.
Thank you for reading, Rachael and please send our well wishes to your sister as this is by no means an easy thing to go through or recover from. I hope she can find some comfort and support here. Thinking of you both.
Thank you for sharing and all the work you are doing! I turned 18 a month before I had my first child. I had to have a csection. I started having back pain, then breathing became labored. Slowly got worse and was staring to have LOTS of pain. 2 12 weeks after surgery, I saw OB who told my mother I was just being a baby, its just a pulled muscle. Never once listened to my lungs/chest. My mom mentioned maybe a clot and he said “no. She is way too young for that”!!! By 3 weeks I couldn’t move. I was pretty much stuck in the recliner leaning forward on a pillow, gasping for air in intense pain. I couldnt put any pressure on my back. Went to my gp and he listened to my chest immediately. Said he suspected blood clot and sent me to get a chest xray. I went same day and went home. Woke up even worse and with a rash across my chest. Went into e.r. it was such a mad rush after I walked in the door. Ilgave me benadryl so I was kinda loopy. They did the spiral c.t. and then a thorocentisis (sp). A very long needle through my back into my lung to suck out the fluid. Apparently, I had multiple clots in my lungs and my right lung was FULL of fluid. I also had a clot sitting RIGHT next to my heart. It was touch and go as they weren’t sure whether or not it would move. They were amazed that I made it that far.
I got better and went on with my life. Just a fluke they said, prob just a result of surgery.I developed anxiety and panic attacks from that event that have followed me my entire life (now 31). I finally decided to brave having a second child. I was tereified after the firsr. My doctors swore they would watch me close, I’d be fine. I became pregnant at 29. I went to a specialist who saw me once at beginning of pregnancy and thats it. I was pair on a therapeutic dose of heparin, self injected shots twice a day in my stomach. Just a precaution. Had to have another csection. Stayed on therapeutic dose. At about 3 week mark, I was having knee pain and started to get red and slightly swollen. Some chest pain. Sent me to e.r. Got the ultrasound done and c.t. DVT from calf into pelvis and a few sprinkled in my lungs 🙁 within a few hrs of being admitted, my leg blew up and I developed cellulitis on that leg. It was so horrificly painful. They eventually placed a temp ivc filter and attempted to go in and bust it up, but too late. They leftover clot was calcified. They removed the filter A few months later but it had travelled and was difficult to remove. This time around, they discovered the old clot in my pelvis that was missed back in 2000. My body had naturally turned to surrounding veins to make up for the blocked one. Now, I have post thrombotic syndrome. My valves are almost useless. I have to wear thigh high compression stockings everyday and elevate my leg throughout the day. I have trouble walking – limp and go slow. If I try to move at even a normal pace for a more than a few seconds, its verynpaonful and my leg just stops working. Goes limp. I cant do anything that gets my blood moving, cant even walk more than like 10 feet without having to stop and rest. I am no longer on any blood thinners, they said they tested me for everything and I’m negative. Just a combo of prego hormones/surgery. I am terrified everyday. Every chest pain. Every new pain in my leg. Panic attacks are at least a weekly occurrence. This had dramatically changed my life. I spent the first few months that of my child’s life basically useless and unable to care for him. I needed to be cared for. I can’t take my child to the zoo.not even a park because I can’t chase him. If I can’t bring his stroller, we can’t go alone.
Sorry to be so long winded! Haha this was my edited version!
Hi Erin! Thank you so much for sharing your story on BCRN. I really appreciate you stopping by and taking the time to do so. WOW! What a story it is, and I am so thankful you are here to share it with your fellow survivors. If you want to send your long version – you still can! Check out How To Share Your Story (Under the How To Tab on the homepage), and I would be glad to share it in a Survivor Speaks post. I do that about once a month!
I can relate to your story in so many ways, and I think a lot of people here can. This is completely life altering, you are right. I feel like I have not gone back to the same person I was. It just isn’t possible. Not to say you can’t live a new life or find happiness, but this is a HUGE thing and not just like recovering from the flu, surgery or a broken bone. It changes people.
I can understand your fear and frustration and the panic attacks. I have had all of those things and it as effected my life, even without a child to care for. I sincerely hope you do not have to experience this again and that you are on the road to recovery. One of my worst fears is developing cellulitis as a result of my DVT and I have heard it is very painful.
Again, please consider sharing your story as I think it is important to tell given the things you have experienced! Thank you for reading and thinking of you.
I love this story of survival! So happy you have recovered!!
Thank you for reading, Kristi!
Thank you for sharing x
After four days of lower back pain, I woke up with excruciating pain unable to stand straight up without the pain; in what I thought was my ovaries. I’m a 33 year old stay at home mother of 3 and just put off going to the er until 7pm when my husband came home from work. I thought I was just going to go in the er and be told it’s in my head, but thankfully I am a woman and they decided to do a ct scan to check my appendix and also rule out my ovaries. Next thing I know the er Dr. comes back and tells me that my scans showed I have a blood clot in my pelvic region and that he’d never seen clots in that area before so he called another Dr. I was very surprised when he came back to say he was admitting me for the night. I was given a shot in my stomach and put on Xarelto the next day. I am currently on day 2 of Xarelto and I have done nothing but Google and research dvt, Xarelto and I’ve totally freaked myself out. I keep hoping it’s not a big deal but also am freaking out that in a split second it can hit my lungs or go straight to my heart. There is no family history of dvt and I don’t smoke tobacco, the birth control I’m on is nexplanon and the Dr.s say it’s progesterone not estrogen, so they ruled that out. And I haven’t been on any long trips. I’ll be going to a hematologist and hopefully they can let me know why I developed this. Dr also said I may only need to be on blood thinners for 3 months and then never again.
I have almost the same story as you. They put me on xaletro. I to am worried! How did you do?
My story is kind of similar and I would love to talk to Caitlin if I could!
Hi Macie – feel free to e-mail me! Caugustine@stoptheclot.org
You should join our face book page for portal vein thrombosis. Most of us have numerous dvt, clotting disorders etc.. It is a great place to get info on new medicines, treatments and sumptoms.
Tiffany-
If your doctor is any good then he would know that clots can form in any of the small and large veins of ankle, legs, pelvis, etc. Saying that you should be able to go off of clotting meds is very wrong. If you had a doppler ultrasound of your pelvis or legs and it is confirmed that you have a clot, then you need to go to a more reputable doctor who knows how to treat you correctly. If you are susceptible to clots you can not just stop all meds in a short time. I would definitively seek better care of YOU-
About 2 weeks ago I was diagnosed with DVT all up my whole leg. It started off as a weird pain in my inner thigh but I just assumed I had strained my leg, each day the pain would get considerably worse until one day I knew it wasnt normal. Mum took me straight to hospital where they discharged me almost 2 hours later saying they weren’t sure why i had leg pain and that it was probably just a strain. The next morning i woke up at 3 am and couldnt feel my leg, all i could feel was an immense amount of pain, i looked down at my left leg and it was double the size, hard as a rock. Mum rushed me to a different hospital which sent me into a procedure almost immediently, the clot was 10 cm from my heart and i was in hospital for 2 weeks, 1 week in ICU. I’m so grateful to even be typing this and its so comforting to read other peoples stories. Im 18 also and i have never had a more traumatic and scarring experience.
Thanks for sharing your story. I was an 18 year old, male, healthy, active athlete when I began to develop calf pain in my left leg. The first three doctors visits I was told I pulled a muscle in my leg playing rugby and that I should ice and rest. Less than a week later I was unable to walk and had a fever of 104+. I personally didn’t think I was going to make it. After my doctors consulted and decided to have an ultrasound done on my leg, a massive DVT clot was found from my ankle to my groin. 14 years later and lots of self awareness I am able to live a semi-normal life. There is hope. Don’t wait until the last min and advocate for yourself.