My clotting history dates back to 1994 with my first known risk being birth control. At that time, no leg scans were done to confirm my diagnosis, but looking back, I know that is when I started clotting.
A few years later, I had multiple superficial clots in my legs. My doctor didn’t seem concerned and only instructed me to take Ibuprofen, heat and elevate.
While training to run my first marathon (couch to marathon) in 2003, less than a month before the marathon, I developed multiple superficial clots and was told that I was to rest, take Ibuprofen, heat and elevate. I was also told not to run the marathon that I had been training for 9 months to do. They still ran no tests to determine root cause.
In 2006, I had a pain in my thigh and I told my doctor I believed it to be a clot. They sent me home with a diagnosis of cellulitis and a script for Cipro. That weekend, we drove 6 hours to attend my cousin’s wedding with no dancing for me due to the pain being unbearable at this time. I returned to the doctor with no improvement after a week. They finally performed the leg scan and confirmed a (very painful) superficial clot. When I got pregnant a few months later, my doctor decided to have a full work up done to see why I was clotting. We learned that I am hetero for FVL & MTHFR. Neither my hematologist nor my primary doctor believed that having either heterozygous genetic anomaly would increase my risk of clotting so they put me on 81mg aspirin for the duration of my pregnancy as a precaution. I joined a list serve born out of FVLEIDEN.org, created by Deb Smith – before the days of Facebook. This community begged to differ. They provided support and advice much like SASK.
In May 2008, a year after a successful pregnancy, I woke up and walked down the stairs with a “groin pull” sensation. After arriving to work, one leg felt heavier and I immediately suspected a DVT (my first). My FVL list serve community urged me to get to the ER as sson as possiblefor they believed I had a DVT. With DVT confirmed, my FVL list serve community gave me the best advice. they told me I should seek out an interventional radiologist and get a consult for a catheter directed thrombolysis (CDT). I found a vascular surgeon who would perform the procedure, knowing the best success happens when the procedure is performed within 7-10 days of DVT onset. Time was of the essence to prevent post thrombotic syndrome (PTS). I was asked to be in a study which was to help determine if DVTs were better treated by Warfarin+time or by the CDT. I declined, knowing that the CDT was what I needed to do. During the surgery, it was learned that I had May Thurner’s Syndrome (MTS), something that wouldn’t have been found without the CDT. I had a stent put in to prevent future issues, believing that to be the cause of my DVT.
Looking back, I had the perfect storm which helped facilitate the DVT occurring – dehydration caused by food poisoning that resulted in bed rest & starting a new diet full of green veggies – all in a week or two span. I had felt the superficial clot the week before in my ankle on Monday, in my calf on Thursday and gone (no pain) by the weekend. The DVT symptoms occurred the following Tuesday. I was on Warfarin for 6 months & then cleared. I never felt I had dodged a bullet so to speak.
In Feb 2016, I got home from work, elevated my legs to watch a little TV, and upon standing I felt one leg was heavier than the other. Immediately, I thought I may have a DVT. I went upstairs & packed an overnight bag while calling my doctor’s office to talk with the on call doctor. He told me to drive (through a nasty snowstorm) to the regional hospital where I was sure they’d keep me for a night and send me home. The ER whisked me in, confirmed the DVT and was afraid to touch me, preferring to transfer me to the hospital my vascular doctor was affiliated with. Needless to say, I had my first chauffeured (ambulance) ride to the city for a lovely weekend at the B&B (was stuck there for 48 hours in observation). A week later, my vascular doctor had me in to clear the clot and put in a 2nd stent to elongate the first one with 6 months of Xarelto which caused horrible bloating and a 30 lb weight gain in 6 weeks.
About a month after stopping Xarleto, whistling as I worked in the garden all weekend (Nov 2016), never occurring that I could possibly have another DVT, I became dehydrated. Within two days time , I knew I had a superficial clot. I treated myself (NOT ADVISABLE!) with regular aspirin to “dissolve” the clot for a month. The aspirin wasn’t working, so back to my vascular doctor for a check. All went well, only a superficial clot was found, so back on Warfarin it was with the hope of preventing a DVT. A few days later, I had a ‘”twinge” in my back, believing it to be a slightly dislocated rib, I saw my chiropractor for an adjustment. That same afternoon, I saw my hematologist for a follow-up and Warfarin management. Both were told of my pain which occurred only with deep breath and only one spot on my back, right side under the back of my bra. My pulse O2 was 98% & heart rate was fine. The pain level increased significantly over the evening. After 2 painful nights, I googled rib pain and PE. Two posts came up stating that PE was often misdiagnosed as rib pain. Given, I had suspected I had a superficial clot for a month which had been a confirmed diagnosis the week before, it made sense that it was a PE. When my husband brought me to the ER, I told them it was very likely I had a PE. They ushered me in quickly and performed a ultrasound that confirmed a DVT and the CT showed bi-lateral/saddle PEs. I got in quickly, so no residual issues for which I am very lucky. I am on Warfarin for life now and I’ve been having (mostly superficial) clots for 25 yrs now. The years of clotting and multiple DVTs weakened my valves. Due to this damage, I’m now more prone to DVT’s.
I’m one year out from dodging that PE bullet and hear the message loud and clear now!! I am thankful I didn’t die, as my grandfather did from a PE. We only live once and I am so very blessed to not have PTS or chronic pain from all my years of clotting. I am also equally blessed to have a wonderful husband that supports me. As much as I resisted having to take Warfarin for life, it has given me a second chance to be with my family, do things I love like scuba diving for which I did this summer and it was a blast! I don’t think I’ll be skydiving again and I don’t think I’ll be skiing black diamond trails on icy days, but on fresh powder? Sure! I’ll wear a helmet and take it slow. I’m probably more at risk of bleeding when I am quilting. Counting my blessings daily.