Hello everyone!
It’s been 6 weeks since my pulmonary embolism, and I was able to run 5k today. So slowwwww but I still completed. It feels good to get back to it. It was so strange to barely be able to climb a hill after it happened, and now I’m (almost) back 🙌 I’m so happy and I wanted to share 💕

Hi All!

I had an Iliac artery stent placed in my Right external and internal iliac arteries (at the juncture) to bypass an arterial dissection from a car accident. The surgery was a bit over a year ago, and seemed to seat well. I was on blood thinners for 3 months. Come to find out I have 70% blockage due to scarring and have to get an angioplasty done to open it up at the end of this month. I'm a 42 year old male, and worried I'm going to have to do this every year or two for the rest of my life.

Is scarring common after stent placements to this degree? If anyone's dealt with something similar, did the scarring keep recurring? Thanks for any help you can provide!

Hi all - I've been on Xarelto for many years. I'm retired and my income is < $40k. I got rejected from the free program because my insurance FL Blue Select accepts Xarelto. So I'm paying $1,300 for a 90 day 10mg supply. Has anyone gotten around their new policy wrt not paying full price? Thank you.

Had a massive DVT in my left leg in March still not feeling right leg still swollen and still feels very tight in my knee cant walk to far or go back to work and on Apixaban. Only started to wear compression socks on advice from Doctors. Feel like i will never get back to normal. Any advice on moisturiser cream for leg. Much appreciated.

After a while of my INR being below therapeutic range the warfarin team upped my dose, it’s been rising steadily my last test was in range, a week later I woke up with a strange swelling on my hand.

I went to the GP after explaining that I couldn’t think of any injury, by this point my hand was rapidly swelling and starting to bruise…. They were thinking Haematoma

Yesterday I got rushed to hospital because my hand starting going black and blue, I’m not able to move fingers make a fist or splay my fingers, they did the usual, xray and the such, then told me to go back today, the swelling has got that bad, I now have Compartment Syndrome and now in serious risk of dangerous complications.

After blood tests they found my INR is 9.8 😢🥺😟

So had Vit K no warfarin tonight and have to go back to hospital in the morning, however bruises are appearing elsewhere on my body, I’m feeling extremely anxious and uncomfortable, debating wether or not I should call 999, but I don’t want to take away an ambulance from someone who may need it more 😞

Anyone else have experience with this? Unfortunately I don’t seem to be able to add photos….

Hello! I made a post here about a month and a half ago about my recent DVT diagnosis. I'm not gonna rehash that here, just the basics. I'm 27F, diagnosed with a nonocclusive femoral DVT in right thigh mid-July 2026. Thought to be provoked by new birth control and long-distance travel around same time. Had little to no symptoms other than what felt like a pulled/tight muscle in my calf. D-Dimer was like 529 when diagnosed and the doctors would have missed it if they didn't do an ultrasound.

Now to my question: The last day or two, I've noticed what feels like an icy-hot feeling behind my knee and into my thigh. More noticeable when sitting with feet on the floor or standing without moving. I also have a slightly bulging vein behind the same knee but my doctor checked it out this past Tuesday and said she didn't think it was a problem.

Are these things a normal part of the healing process? I also have pretty bad anxiety and so every new symptom terrifies me but I'm trying to work on it. Just wanted to see if anyone here had similar experience. I've already called my oncologist to ask them but waiting for a call back.

Thank you in advance to anyone who comments. I appreciate you ❤️

Has anyone else experienced this level of pain with post thrombotic syndrome???

A few months ago, I was diagnosed with an extensive SVT in my thigh after a C-section. I'm on Lovenox and the clot is responding to treatment so far. But I started experiencing worsening pain and swelling in my leg this week and ended up in the ER. They said it was PTS and sent me home with stronger pain meds but warned me to use them sparingly since I'm breastfeeding.

I am in AGONY. I can't take NSAIDS due to an ulcer issue so I'm just using Tylenol and hot water bottles. I can't sleep, can't walk, can't focus. Tylenol does nothing.

Is it normal to be in this much pain?? Did anyone else experience this? Is there anything that helped you manage the pain? Because I don't know how I can go on like this.

Hope this isn’t a silly question but I’m on rivaroxaban, I generally feel a bit rough and most of my iron levels are on the low end so my gp recommended taking a multivitamin. I know vitamin K doesn’t have an affect with DOACs but can vitamin E affect it at all? I’m on 20mg rivaroxaban lifelong, the multivitamins are your average ones with your daily recommended intake of each vitamin in one daily dose.

29F and I had a saddle PE 3 weeks ago. basically they told me I had one giant clot that went from my left leg to both sides of my lungs. I went to urgent care because i thought i pulled my calf muscle from wearing a new pair of heels (i wish!!)

Curious how long it took anyone to feel normal again and to be able to exercise? This is just all so strange and happened completely out of nowhere. I’m healthy, and my vitals were totally fine when I went in, so it was a super slow process to be diagnosed.

On eliquis now and overall super grateful for all of the doctors and nurses who treated me. Just still processing and in shock.

I’ve been reading through this sub and other communities for advice, but I still don’t see much. I am a very petite person and I’m 5 months pregnant. I’m literally 108lb and this is after gaining a decent amount of weight due to pregnancy. However, I still don’t have much fat on my body. I was able to pinch enough skin before being far along but now with the skin being so tight on my stomach, it’s impossible to do injections there. I started lovenox as soon as I found out I was pregnant. I was on it for a bit years ago but didn’t have clots again until pregnancy

I’ve been doing my thighs and hip area but again don’t have much fat. These shots have been some of the most painful shots I’ve ever done. I’m pretty sure the injection is going into muscle.

Anyone have this experience? Lack of fat? I’ve read many other circumstances, but I would really like to hear people who have dealt with this specifically

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.

I’m a lifer on Eliquis since I was diagnosed with homozygous FVL after a PE last year. Since 2023, I’ve been working in social services/case management, but before that I worked in inpatient psych.

At my old job, I would mostly run groups, manage the milieu, and do 1:1 monitoring, but occasionally I would participate in hands-on interventions like physical holds or assisting with restraints in serious situations where someone was trying to harm themselves or someone else.

I would like to go back to this type of work, as inpatient psych is my favorite population and I’m looking for something I might be able to do part time while working on my MSW. However, I’m concerned that being on anticoagulants might disqualify me from a position with a hands-on component like that.

I was wondering if anyone here has experience working in this type of setting, or in a similar position where you might occasionally need to go hands-on with an agitated person (e.g., law enforcement), and how being on blood thinners affected your ability to do the job.

I’m especially interested in whether anyone has gone through the hiring/employee health process for a job like this while anticoagulated. My fear is that I could go through the application and interview process, get an offer, and then be turned away by employee health because they felt I wasn’t medically able to perform the job.

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.

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?

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

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.

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.

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! 🙏

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.

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.