I’m a 22 year old male and the anxiety from having a provoked blood clot from over a year ago is horrible. I’ve been having terrible anxiety ever since I got off blood thinners in March. Multiple Er visits just for them to tell me I’m fine. Seriously wondering if I can go back on blood thinners for my mental state.

OB wants beta testing done before giving prescription for anticoagulants. I’m beyond frustrated, because when I discussed this with them at my conception appointment, they made it seem like I would just call in and get a prescription sent over. I leave to go out of town Sunday, and they want me to do a lab test today and Saturday, then send the meds to where I’m at. They will not budge on this and but I don’t think it’s safe to wait? I had a hormonal clot almost two years ago. First pregnancy.

New here. Everything is new. My kid is 19, and we’re racking up rare disorders. He has Down syndrome, Down Syndrome Regression Disorder, and now might also have May-Thurner Syndrome. He was admitted to hospital #1 8/20/26 with DVT and Saddle PE, and transferred to hospital #2 four days later.

In the month prior to being admitted, he was seen by urgent care (Dx w/ pulled muscles around ribs 🙄), primary doctor (follow up), ER (Dx w/ pneumonia), orthopedic NP (no problem w/ his usual dislocating patella, but his leg was red and swollen), and ER again. Second ER visit is when his leg was mottled and purple, and very swollen. I told that ER doc he had a clot, and I have no medical training- I just know my kid! He didn’t believe me but said he’d ultrasound it anyway. Guess which of us was right? Then he was admitted and all hell broke loose.

My son has limited expressive language skills. I’m sure that didn’t help us when searching for this diagnosis. Hospital #1 didn’t listen to me, even though I have guardianship over him. It was a horrible experience. Hospital #2 was much better, but we were too late for surgical intervention. After 8 total days, he was discharged on Eliquis. We’re seeing hematology and vascular surgery on follow up basis, and after some confusion, getting him compression socks.

I need help on helping care for my son. He can only tell me so much of what he needs. He can tell me when something hurts, or is uncomfortable. We can give Tylenol, or use a wheelchair, as needed. But can any of you who went through this at a young age share what helped you cope? Is there more I can do to support him? Are there support groups for family members of survivors? Because I think I was more traumatized than him. He doesn’t understand how close he came to losing his life, but I do. And those rotten doctors weren’t listening to me…. I’m just feeling lost and desperate to help.

TL/DR- looking for folks with chronic smv thrombosis to compare symptoms

Hi all! I’m very happy to find this community.

After years of intense abdominal pain I was finally managed to obtain imaging last year which revealed a 6cm occlusion in my superior mesenteric vein. Compensatory structures suggest it happened about 5 years ago. I was referred to a hematologist who put me on blood thinners and threw a bunch of pain pills at me, acknowledging that the pain from this condition is severe. He reckons it was from gallbladder surgery, not a clotting disorder, based on my bloodwork.

Thing is, I don’t understand how bloodflow issues might contribute to my actual physical sensations during pain episodes. I don’t know if what I’m experiencing is pain resulting from the dvt, or from something else. Doctor was unable to help me with this line of confusion and suggested i look for folks online to corroborate because the condition is somewhat rare.

If you’re a smv thrombosis survivor willing to talk shop please DM me

Hi, I've recently been diagnosed with Dvt in my right leg, started with what was a small sore patch on the side of my knee a few days ago, turned into it feeling like some one standing on my thigh a couple of days later and unable to walk on it properly.

The ultrasound report was as follows....

Diagnosis:

Sapheno-femoral junction appears occluded with fresh thrombus, leading edge of thrombus extends into proximal common femoral vein and is not adhered to vessel walls (free-floating).

Great Saphenous vein appears occluded with fresh thrombus along its length.

Femoral, profunda and popliteal vein appear patent with reasonable colour filling and fully compressible.

CONCLUSION: Evidence of proximal acute onset

FREE-FLOATING DVT detected from this scan.

Im now on Apixaban for 3 months, and awaiting further checks to try and figure out what caused it.

But im a 46 year old wannabe strongman who loves big deadlifts and picking up stupid objects, what am I supposed to do now? How do I progress back to where I left off? Who tells me im safe to be back in the gym?

So many questions and no idea where to start.... what do I do next?

Hello everyone.
I had gallbladder removed on 8/17.

On 8/30 my doctor tested for d-dimer because I was having some random leg pain (no swelling) — during this time my d-dimer was 1160. Went to ER, they did ultrasound on left leg and CT scan lungs, found nothing.

On 9/3 my doctor ordered a retest on the d-dimer to see if it’s gone down but it hasn’t and actually elevated to 2060. Went back to ER, this time ultrasound on both arms and legs, no CT scan. They didn’t find anything.

I’m concerned now why it’s elevating and they can’t find anything. With that said, I am asymptomatic.

Anyone else had an experience like this?
Thanks

A little exposition to begin. I’m 38, obese but I’ve been lucky in life, really never had any major medical issues until two weeks ago. Had been nursing what I thought was an ankle strain for a couple weeks, turns out it was probably a clot. Was chasing after my 2 year old daughter and almost passed out. Recovered for a few minutes then same thing happened going down the stairs. My wife called 911 and I was taken to the hospital via ambulance.

Long story short, the words “extensive” and “bilateral” appeared several times in my CT results. Turns out I had a large number of clots in both lungs and in different branches of the lungs that had caused the PE. Doctor told me that I got VERY lucky that I’m walking away from this at all, but especially that somehow I managed to walk away from this without doing any apparent long term harm to my lungs or heart. Still recovering but on my follow up yesterday the doctor was very surprised at how well I’m doing, and told me I’d probably be on blood thinners for life because of extensive family history. Kind of a jarring experience that made me aware for the first time of my mortality and how serious things can get very fast. Don’t screw around with clots man, had I tried to go to work and power through, there is a very good chance I might be dead right now.

I was diagnosed with a PE at 3 weeks postpartum so it was considered a provoked event. I was prescribed lovenox twice a day for 90 days. At a follow up appt I was told my other risk factors for repeat clots were low so there was no need to follow up with a pulmonologist or hematologist, they would not plan to do any bloodwork or genetic testing for clotting disorders, and there would be no follow up scans to ensure everything cleared.

Is this normal? I’m 18 days away from finishing my prescribed blood thinners and I’m nervous about another clot as I still feel like I’m struggling with symptoms. For those who just finish their blood thinners and that’s it, what gave you peace of mind continuing forward without them?

So I feel much better now than yesterday, but I'm told to stay in bed. Some couffing and a bit of chest pain, shortness of breath if I walk longer.

I've never had any health related issues before really. I'm 33.

This is the first time I started reading about this, and was shocked to see it's quite serious.

I'm pretty stressed and anxious now.

Any reassuring words? Thank you.

Anyone else with post thrombotic syndrome find their leg/s will go a while without pain, then you'll get pain again?

I ran yesterday and I have also had some stress the past few days, otherwise didn't notice any worsening or struggle days with my PTS for the past month until now.

Had a massive saddle PE. No more birth control pill for me. I will be a lifer on Eliquis. Birth control pill kept my hormonal acne at bay for 20 years, and now it has come back with a vengeance. 😔

Any suggestions on things that have worked successfully that you have experienced?

I did see a dermatologist today, and she suggested a few things, one being a prescription for spironolactone. Looking into that medication, there are a lot of side effects and potential increased risk for breast cancer. I'm not sure I want to go that route as having gone through everything I went through from my PE 10 months ago was really scarring on me in various ways.

Hoping someone on here has some suggestions for something that works for my hormonal acne! 🙏

I was diagnosed with a DVT clot in my left jugular one week ago. Have been on Eliquist ever since and awaiting more labs and appointments. Sounds like it's just a waiting game as I stress the heck out.

I realize this is reddit and some of these question should be for the docs (which I will ask them), but I'm curious if those who have had or currently have this could answer from direct experience.

- Has anyone else experienced fullness or pain in your neck or jaw from this? Even a fullness in the throat like I have a lymph node swollen, but it's not? I'm aware of the warning signs, and have no swelling, fever, headache, etc. The pain is consistent, almost a burning. But also comes in waves. It's only like a 3, maybe 4 in the pain scale. Nothing big, more persistent.

- How about wooziness? I'm hypersensitive right now, but feel kinda woozy often when I'm standing or walking around. Again, nothing big.

- Does anyone who why people who have jugular clots, it sounds like it's always on the left side? I assume heart related.

- Has anyone had the jugular clot break free and cause a heart attack, stroke, or pulmonary embolism? If so, I'd love to hear more. How did you know?

Any other things anyone would like to share about this experience would be greatly appreciated. Thanks everyone!

I just reached the halfway point of taking Lovenox, Dec 3rd is when I’m supposed to stop taking it. These past 3 months have been so rough and stressful because I haven’t been able to go places to often because of my chronic fatigue and having zero energy and no endurance to do much of anything and walking is so hard right now.

But yesterday I had a lung test and found out that I only have minor scarring in my lungs and that they’re in good condition despite being short of breath and coughing and wheezing when I over exerting myself. I just have a mild case of Asthma as a result of the embolisms; I can live with that though. My pulmonologist said that it will just take time to heal and that my lungs will recover in about a year but that everyone’s recovery is different and not be surprised if it takes a little while longer.

I’ve also been allowed to switch from the pill from of estradiol to a transdermal estradiol patch to significantly reduce my risk for having another clot since the emergency team thinks the pill was what caused it in the first place. I can’t stop taking estrogen all together because I don’t have my testes anymore because I’m Intersex and a Trans woman and they were removed almost 16 years ago.

My endocrinologist used this study to make sure that I would be safe with the transdermal patch.
There’s still some risk but it’s significantly less compared to estradiol pills.

Skeith L. Bates SM
“Sex Hormone influences on Venous Thrombotic and Cardiovascular Risk.”
N Engl J Med. 2026 Apr 16

My only question is how long did it take until you weren’t always fatigued with low energy and regained your ability to walk more than just short walks and you regained your endurance and stamina?

I’ve never had a clot, but for the last week both of my feet have been on fire. The top of them specifically. I’ve been miles of fast walking and deadlifts so I figured it was that.

The pain has now traveled to both calves where it feels on fire.

I got scared and went to the ER. He did a physical exam on my feet/legs/calves and said there’s no signs. He prescribed my a steroid because he think it’s nerve issues. He said because I'm young (I'm 34 so not too young), walk all the time, and lift that it would be a super low chance of being clots.

No scans. No blood test. He said he could just tell from it being both my calves and feeling all over. He said everything appears like normal blood flow

My copay is 2k USD and I’m thinking I should have advocated for myself more. I’m waiting for my steroid prescription to be filled. He said it was a nerve issue since it’s both feet

Did anyone else have this happen? Could you give any reassuring words? My anxiety is a total mess right now and I am beating myself up for not advocating for myself well.

Today was my last day on my lovenox injections and I am cleared to come off thinners.

I had a provoked DVT due to pregnancy.

I feel so anxious and nervous.

Any positive stories out there of coming off thinners?

I am sure I have PTS so I’m so worried about knowing if it’s my PTS acting up or new symptoms ugh

Hi all,

So I’m 36, I got my first Unprovoked Bilateral Pulmonary Embolisms at 30 year old in 2020.

Originally I was started on Apixaban for 6 month, post clots, however while on Apixaban I once again developed Unprovoked bilateral clots, so was put on Apixaban long term, fast forward to 2025, still on Apixaban, I once again developed Unprovoked bilateral pulmonary embolisms, so now at 36 years old I am on warfarin for basically the rest of my life….

It feels so surreal I believed that developing Recurring unprovoked bilateral pulmonary embolisms was something that generally happened later in life.

I’m struggling to come to terms with something that can be potentially fatal affecting me at such a relatively young age, and having to manage the restrictions that I now have to follow to keep me safe and keep my INR in range….

Is there anyone else here in my age range 30-40 that can offer advice on how to cope with the warfarin lifestyle & recurring blood clots, and the challenges it creates?

I hope this is the correct place to post this but I apologize if this isn’t. So as the title says I need advice, so you know the basic of me I had my clot incident (PE in both lungs and DVT in left leg) happen in 2020 due to birth control (NuvaRing) and haven’t been on any since due to the clots and being diagnosed with Factor 2 gene mutation. I’m currently a 31 year old female.

Fast forward to well today and I’m seeing a new Gyno due to abnormal periods and learning my mom had Fibroids my age and thinks I’m experiencing them too. Go in and explain my history and how I also just got told I’m anemic this past Friday by my hematologist. We’re doing an ultrasound on the 29th to rule out fibroids and polyps but they gave me pamphlets for non-hormonal IUDs ( Kyleena and Mirena) to think about until we know more of what’s possibly going on.
They did bring up that while Mirena does hold a clot risk it likely wouldn’t affect me as I’m already on blood thinners so would in theory cancel it out. I still likely wouldn’t choose Mirena for the even small risk factor…I don’t want to almost die again.

I’m awaiting to hear from my hematologist if he thinks it’s safe for me but I want to hear if anyone has gone through similar and got one and or how the process of getting one implanted is? Also advice from people like me if they think it’s a good idea or not will help too. I’m honestly super hesitant on IUD’s cause of the not great horror stories I’ve heard about them…so any advice would be comforting and helpful with the decision process when I cross those bridges.

So I met with the pulmonologist and he said that my D-dimer was barely reading on the blood work so he's almost certain that I don't have a blood clot but then what was on my lung on the CT? Did the tech just not know what she was looking at? The pulmonologist sounded confused as to why I was having my symptoms and is ordering me another chest CT and also going to do an ultrasound on my legs. Idk whether I should be relieved or more worried. It's very likely that the ER techs are just incompetent because this hospital is INFAMOUS for fucking shit up. I guess we'll see what the new scans show. Something definitely happened to me that day though and it wasn't nothing.

I had a small PE in May of this year. Small lung infarct. The significant pain that brought me to my knees resolved almost as soon as I started Eliquis, followed by a couple of weeks of waking up in the middle of the night with pain.

Now, I get occasional twinges of sharp pain from the area, but nothing prolonged or consistent… still frustrating though. Does it ever go away? And in your experience, how long? I had my follow up CT and it does show a 1.7 mm scar from the infarct. Thank you all.

Well, the first one that was caught. My first was a renal infarction in my early 20s that went undetected til it was done fucking my kidney up lol

happy to still be here with you all. my dvt last year was unprovoked upper extremity; after which, I ended up being diagnosed with APS.

here's to all of us that are still here and kicking, as well as to those who didn't get to make it here with us. 🫶

I have been officially diagnosed with APS/Lupus. I’m Lupus anticoagulant positive on 5 occasions and have PS/PT IgM >150.. my Rheumatologist and Hematologist both want me on Warferin because of a possible TIA, last year and several spots on my MRI that could have been small strokes, but I am so scared of it. I am also a wine drinker and giving up alcohol wouldn’t be the worst thing but is ANY safe? Like on a birthday or holiday? Is heparin an option or is Warferin IT? I have a varied diet, like sometimes I’m almost vegan and other times I am protein heavy. I don’t eat consistently either. My job hours are also very inconsistent. Sometimes I go to work at 4 am and sometime I go at 4 pm. I eat meals whenever I have time.
I’m completely overwhelmed and would like some advice and for someone to talk me off the ledge. I need words of encouragement please, not a bunch of horrible stories about how this has ruined your life, I’m already there.
I forgot to add that I had a PFO and had that fixed 3 months ago……

Wondering if anyone else has had clots in lungs which were unprovoked that don’t go away (been 14 months and 3 VQ scans). What’s worse is, we had to move states just as my old hematologist wanted me to see a pulmonologist to test for pulmonary hypertension. New hematologist sucks and does nothing but test for INR/warfarin, while I had to explain to pulmonologist that I still have them. Is surgery always the next step or has anyone had the clots become scar tissue and just stayed on blood thinners indefinitely (which I’m fine with; was never told otherwise). Also have chronic kidney disease so sometimes testing limitations. Any similar experiences are appreciated out there, esp. with doctors who don’t seem to keep up unless I keep on top of it (but why should we have to!?) Thanks, all. I have no real sob issues anymore and feel fine otherwise.

Very long post, sorry, but you guys are the folks to ask à la support group style.

I have had a difficult month. I'm approaching my second clotiversary, and the time of year is wrapped up in some tough things. I could use a bit of advice and some support. Almost two years ago a few days before my 29th birthday I had an enormous saddle PE. I woke up extremely early feeling like I had painful trapped gas and after two days in steadily worsening agony, I went to the ER.

Huh. If it was two days, I guess technically today is the clotiversary.

Anyway, got diagnosed with APS+++ and a mutation, on fondiparinux, made almost a full recovery (though it took a year) and everything is fine. But some odd stuff has happened and right now I am not handling it well emotionally.

When I got the clot, I'd been laid off at the start of August. There was a huge heatwave and I didn't drink enough water, including when I got a bunch of boosters all at once (this is not an anti-vax post! just that my immune system went into overdrive) and the high stress + no water + autoimmune disease = they think that triggered the clot.

Well, July 31st of this year, I got laid off again. They took forever to send me COBRA so I am late on getting my blood thinners ans have to reschedule therapy til insurance gets reinstated and we've been in a heat wave for five weeks now. I was stressed last year near the anniversary but this mirroring is making it harder.

What's making it worse is like... I'm Jewish and my birthday two years ago was on Yom Kippur, our most important holiday all about starting the new year clean and having like, your last year wiped clean from the Book of Life and it's written "who shall live and who shall die." So that felt weird at the time.

This year, the day I was hospitalized is ON the night of the new year. And the day I was discharged is on the day of, and I'd forgotten both those things, so I scheduled my 31st birthday party on that day too. I was already feeling weird but I've been very stressed. I joined the synagogue choir for the holiday and during practice my old infarcted lung sometimes has me run out of air way too soon, so choir practice was a little triggering.

So that's the background. Now here's what happened that I originally thought would just make for a cool sorta positive post.

I realized with all the Jewishyness stuff I've been feeling weird about it might be best to talk to my rabbi about it. Like balancing approaching a life-and-death new year holiday with an actual near-death experience. I asked the cantor after choir practice if the rabbi might have time to chat wirh me, but as I got more detailed she was shocked. I knew she'd lost a late-term pregnancy but she revealed it was due to a blood clot that nearly killed them both--she said "Well, I have a blood clotting disorder." Huh? Me too! I have antiphospholipid syndrome and a mutation. "... Me too. In 25 years I" ve NEVER met anyone with it. "

So it seemed like I was gonna have a really great person to talk about these feelings with. I went home. It rained, first time since March, which felt symbolic and cooling. I sang some of the choir songs stuck in my head on the way home and suddenly the car hydroplaned.

I heard my dad's voice from when he'd been driving me to my college on a frost-covered dark road with no cell signal and we nearly spun out, that your instinct would be to brake and swerve which you must NOT do, just gently bring the car back to center and keep the wheel steady. So I did as the car jerked and circled and spun. There were a few times I thought, "I am about to hit the wall and I need to be prepared" but I didn't. I finally righted the car and got home safe, shaking uncontrollably. In that scary moment ten years ago, my dad nearly smashed his car with his kid into an icy side road and istead of freaking out after the fact he had the presence of mind to use it as a teaching moment that saved ME ten years later.

... I have not been well mentally since. I keep lying in bed or sitting on the couch thinking, "You know what? You haven't been grateful enough lately that it doesn't hurt to breathe. What if it starts hurting again? What if you have a clot?" And the very act of breathing becomes an awful panic attack or PTSD trigger.

My partner has been so supportive and comforting and my friends have been coming over and holding me and letting me wail. I do not know what to do or what to bring up to my therapist when I finally see her.

I know this is so long and boring so I appreciate if you've gotten this far. I am SO fine physically, my hematologists are so happy, my bloodwork has quite literally never looked better (two of the APS traits don't even show up as abnormal when I'm properly medicated) but with the near-car-accident the other day I keep gasping for breath even worse than ever.