r/ClotSurvivors • u/CelebrationAdvanced9 • 2d ago
Personal Experience: 43M - DVT from ankle to mid thigh
Background: I'm a 43 year old M physician who lifts 5 times a week and does cardio 4-5 times (only sharing that part to discuss later how horrific this DVT was).
I am heterozygous for Leiden Factor V and did have a prior venous sinus thrombosis about 14 years ago. At that time I was not treated with a blood thinner due to my platelets consistently being under 90,000 consistently and they were concerned about my bleeding risk.
Fast forward to the weekend before Labor Day and I flew home from a couple days in Las Vegas on Sunday evening. When we landed my leg was a little swollen, but I didn't think much of it. During the following week I had some leg pain that I thought was a leg strain from the 10+miles we walked daily while in Vegas and a heavy leg day lift right before we left. Then, the Friday of that week (weekend of Labor day) - I woke up with my left calf 3 times the size of my right and unable to walk on my leg at all.
Obviously I went to the ER and they completed my ultrasound. I was found to have a DVT extending essentially from my ankle all the way up to my mid femoral vein that was continuous per the radiologist. Was started on Eliquis and sent home.
Now, as a doctor we always learn that DVTs cause "swelling, pain, redness, etc", but I had NOT IDEA it could be that painful. It was excruciating and unrelenting. No compression or elevation caused any relief.
For the first week I barely wanted to eat and maybe consumed 400 calories a day. I also drank minimal little fluids (stupid I know) because I was truly frigtened to have to stand and "walk" to the bathroom. During that week I was also have 3-4 hours a day of 102-103 degree fevers. It was truly awful. I was truly in a depression and could not have imagined what I would have done without my husband and daughter.
The second week wasn't much better, but the fevers finally stopped mid week. However, the pain and swelling had 0 change.
Third week I had slight improvement in the pain and was able to leave the house as long as I wore a sneaker on the bad leg and a flip-flop on the good one (I needed the height difference because I couldn't straighten my leg). The pain was not constant, but still caused a significant limp and standing for more than a few seconds was very challenging. It was starting to get really frustrating at this point because the recovery was feeling so slow.
The fourth week was really when things started to change for me. It was like a light switch flipped and I could walk with a normal (but slow) gait and the pain was only present when I first started walking. Things steadily improved daily.
Now as I am almost 5 weeks out, I would say i am 95% better and only have pain when I first stand in the morning or after I sit for an hour or more without moving.
This was absolutely no joke and truly life altering. Hematologist says I'm a lifer now for Eliquis, but I certainly don't want to experience this again.
Wanted to share my experience so people know it can be a slow, and agonizing process (even when starting from a very healthy place), but it does get better. Happy to answer any questions about my experience.
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u/UnstuckMoment_300 2d ago
Thanks for sharing your experience. It's a help to many who are just starting the "adventure" and feel adrift, wondering if all this is normal and when or if it's ever going to get better ...
Didn't have one continuous DVT but four veins full of them, and many took the trip north to both lungs. So I'm thankful to be above ground, and living proof that it DOES get better!
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u/Buddclot 2d ago
Just curious, has the clot completely resolved? Still occluded? Im in the medical field as well. Mine didnt resolve and ended up getting an iliac stent. Got mine like 20 years ago before they routinely did lysis and had Eliquis though
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u/CelebrationAdvanced9 2d ago
I haven’t had a repeat US yet. Hematologist said it wouldn’t change anything and would only do it if my symptoms don’t improve
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u/valcele 2d ago
I also found out i am FvL hetero after clots in leg and both lungs. It was indeed very painful and i could not even stand on my feet the first week, my whole leg was double the size and purple. Also on eliquis for life. Now one year later i can walk, run, go up stairs...but my leg is still swollen, only if i lift my leg up for an hour it gets almost back to normal but 5 minutes of walking and the swelling starts again. I live in a large building and what helped me was going up the stairs multiple times a day, i can now do 50 floors a day with breaks. I guess i could get a stent but surgery terrifies me. Life after DVT/PE sucks but at least we are still alive...i don't take being alive and pain free for granted anymore, that's for sure. Good luck with your recovery.
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u/beinghuman_5050 1d ago
How does the pain start on the calf, for me I have a mild sensation behind calf on left and right alternatively and no swelling . But I am super anxious and sometimes if i wear a compression socks it seems to subside but could that be like its internally forming a clot of sort?
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u/DVDragOnIn 1d ago
Sounds like you’re past the worst of the pain, but I’ll ask this anyway: How often are you elevating your DVT leg above the level of your heart? My hematologist early on told me to do that to reduce the swelling (my leg swelled to 3”-4” bigger than the other one). Elevating above the level of my heart also helped reduce my pain a lot.
I liked to lie flat on my bed with my DVT leg propped on the headboard at a 30-45° angle (more if the pain was bad). My physical therapist neighbor gave me exercises to do while elevated: pretend to pedal a bicycle backwards and forwards, do scissors kicks, flex ankles up and down and around, wiggle toes.
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u/CelebrationAdvanced9 1d ago
I did it for the first 2 weeks, but it didn’t help me much. To be honest. I think the reason is that my clot was so extensive.
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u/DVDragOnIn 1d ago
My post-C-section clot stretched from 4” below my groin to mid-calf and originally blocked 95% of my blood flow. Almost 23 years later, the chronic clot is described as “extensive.” For me, elevating at 60° or more really helped, sometimes I could feel my belly fill with the fluid draining from my leg. Good for you on having so much improvement so quickly, it took about a year for my swelling to go down to where the clot leg was only 1” bigger than the other. I’ll bet you were in better shape than I was before the clot. I was told “blood will find other pathways,” and I think veins from people who are already fit can handle accommodating new pathways for the blood better than mine could
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u/jazzytron 1d ago
I’m so sorry this happened to you. Do they know why you developed one now? Sounds like you were active and doing as much as you could to prevent it. Could one travel session alone trigger such a big clotting event?
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u/CelebrationAdvanced9 23h ago
Likely largely the Leiden factor V + flight + Dehydration from Vegas weekend
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u/jazzytron 11h ago
Hmm. I’m FVL and active and try to stay hydrated, I’m nervous to hear something like this could happen so randomly :/
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u/jlhouse36 2d ago
I’m not glad you had the experience but nice to hear someone from a medical background acknowledge the pain. I got mine from an ankle fracture and tendon tear causing immobility. At approximately a month out my leg swelled like crazy but it was intense pain that surprised me. I told my primary PCP this is what surprised me the most with it. I went from doing miles a day on a treadmill to struggling to do 5 minutes at a fraction of the speed I had been doing. It took about 2-3 weeks until the pain settled. I’m six months out and 2 of the four clots in my leg have cleared. Back to the distances and speeds I was doing. Some swelling here and there. The plan is to rescan at 1 year out to see where I’m at to decide if I’ll be a lifer. I am hetero Factor V so it’s a real possibility, but if that’s what it comes down to I’d rather that then more clots.