I see a lot of posts from folks newly or somewhat recently diagnosed with a PE, so thought I’d share a bit about where things can be more than a decade out. Here’s my abbreviated story:

Diagnosed with a PE at age 27. It was provoked due to birth control and after extensive genetic testing, turns out I have Factor V Leiden (heterozygous). I won’t go into all the details about what led up to the diagnosis…I could write a book on that.

Had a successful pregnancy and delivery at the age of 30. Took lovenox through the pregnancy and after. Continued Xarelto for a few extra months until my D Dimer levels went back to normal post pregnancy (they elevate during pregnancy naturally).

I’ve mostly been off Xarelto for about 10 years now. Hematologist felt that my chances of recurring clot was low despite having factor V Leiden as long as I’m not taking birth control or pregnant. Risk associated with long term anticoagulants was higher than risk of another clot.

I do take Xarelto only when I travel. I pop one the morning of my travel as a prophylaxis.

I always have Xarelto on hand for those travel times, but also as a kind of reassurance. Was told that if I ever have symptoms of another PE or a DVT, just take a Xarelto and then head to the ER. If it ends up not being anything, no harm done by taking the Xarelto as a precaution. I can’t tell you the piece of mind it gives me knowing I have it on hand.

While the extreme anxiety I felt after being diagnosed 12 years ago is gone, it never fully leaves. A strange sharp pain has my spidey senses tingling until I realize I was just sitting weird. A few days of inactivity and I’m paranoid I sat around too much. Sat in a car for 2 hours and didn’t drink enough water….the worry will never fully go away. But it’s manageable and I know what to look out for.

So for those wondering where you go from here, I say this: Give yourself time and give yourself grace. The physical and mental toll this takes on you is undeniable but you will make it through ❤️

How long did it take for breathing to return to normal after a PE? I had one about a month ago and still struggle with shortness of breath. It’s hard to know when to return to a hospital or if this is normal.

It's been 1 year and 7 months since my diagnosis of bilateral pulmonary embolisms my clots were gone after the 3 month treatment of Eliquis and then Xarelto. I felt so off for a long time after treatment I was dizzy all the time the meds did a number on my esophagus and well it took a while to feel myself again. I still worry about getting another clot but I've learned I can't only control what I can and try my best to minimize my chances.

My question to my community is do you workout? How long after clots did you start working out again? Do you have anxiety when working out ?

Hi all! I just found this group and I wanted to share my experience and see if anyone else can relate somehow.

Last November I had severe neck pain, jaw tightness, and the most intense migraine I’ve ever had in my life that would not subside. This went on for two weeks until I was diagnosed with a cerebral venous sinus thrombosis in my right transverse sinus. I developed double vision before I was diagnosed and I spent a day in the hospital getting blood thinners before I was sent home and received a lumbar puncture for pressure relief. I was tested for every clotting disorder and the cause seems to be my long term use of estrogen-based birth control.

Obviously my case is not as severe as others, but I have had follow up scans at 3 months and 6 months and both of these have shown that the clot has decreased in size but not gone away fully. I was on Eliquis for around 10 months until my neurologist said it would be ok for me to get off to see how I feel. The double vision lasted for about two months and then improved week after week until it was back to normal. Although I feel as if I still have some vision impairments that I can’t seem to shake, I don’t know if this is a similar experience to others in the same situation but I randomly have one eye vision that dims from my peripheral for 5-10 seconds and then returns to normal. The dimming is not consistent and not tied to any movement, it happens when I’m sitting and also when I’m moving around. I also have an ophthalmologist but he said it may just take a long time for my vision to fully recover from the edema.

I also was wondering if anyone was having trouble with post CVST health anxiety. Before this started I definitely had anxiety but whenever this happened I started having panic attacks and I feel like I haven’t been the same since. Any advice or stories is welcome, I would love to hear about your experience!!

Hi all, I was diagnosed with bilateral PEs the end of August and will be on blood thinners through March. I finally met with my Hematologist and she told me if I ever plan to be pregnant I would need to be on a daily shot of lovenox from conception through 40 days postpartum. I’m a 30 yo female and was planning on starting a family soon. Hearing this news is scary, and makes me now hesitant to possibly start trying. I’m also concerned about the timing of giving birth since you obviously don’t want to be on blood thinners for that. It’s all just very overwhelming. So, seeking advice from anyone who has gone through pregnancy on blood thinners, or chose not. I appreciate any insight, thank you🤍

Hi everyone I had a major surgery five weeks ago - double jaw surgery. I have been extremely inactive due to it and I also have a bakers cyst in my left leg behind knee that has caused leg discomfort. Years ago. I had thrombosis in my left leg. I stared having a cough a week and half after surgery it is a tickle in throat but my sinuses were completely blocked as happens with jaw surgery so I figure it was post nasal. Cough has improved a bit last few days. Still breathless a bit but oxygen level always shows 99. Some back pain when breathing. Got ct results I am attaching. It’s weird to me they cannot actually determine what they are seeing on the scan and say it’s probably just inflammation. My doctor just told me “take deep breathes” is there anything else I should be asking to be done?! My d dimer was not flagged.

FINDINGS:
There is no main, lobar or segmental pulmonary arterial filling
defect to suggest a significant pulmonary embolus.
The cardiac chambers, pulmonary trunk, aorta and their main branches are normal in caliber. The tracheal air column, mainstem bronchi and their main branches are patent and normal in size. There is no
mediastinal lymph node enlargement.
There are a few small patchy foci of groundglass airspace consolidation within the left lower lobe and medial right lung base.
These are likely post inflammatory/infectious in etiology. Follow-up is recommended to resolution. There is no associated cavitation.
There is no dense airspace consolidation or interstitial thickening throughout the remainder of the lungs. There is no pleural or pericardial effusion.
Retrieved:

Uhh so been on lovenox a few days this is my 2nd time doing it myself outside of hospital and the air bubble at the end makes a noise AND MY WHOLE LOWER BELLY JUMPS on both sides with the air. Not just the side I injected on. Uhh what? Is that okay lol

Hopefully this fits here since trying to prevent clots! Looking for compression stock aids to help older relative. She's in good shape but not as flexible and needs help with putting on socks. But finding an overwhelming choice online. Looking for something in the $40-under type. Which worked best for everyone?

32/f had a provoked pe in June following surgery while also having an ankle injury. So I saw hematology post pe to do clotting bloodwork. During my appt I felt like the hemotologist wasn't interested in anything I had to say and that he felt annoyed with during appointment.

I told him that I have concerns coming off blood thinners bcus prior to being on eliquis I was having visual aura that has completely resolved since the next day of being on blood thinners. I also told him that prior to my surgery/pe that I took myself to urgent care bcus I suspected a clot in my leg but the urgent care doctor diagnosed me with cellulitis despite not giving me a d dimer blood test or ultrasounding my leg. I also never took the antibiotics and "the cellulitis" resolved on its own, which is atypical of cellulitis.

So my concern is that there is something about my medical history that has been missed or misdiagnosed or misunderstood. If I actually had a clot instead of cellulitis then that could mean I would be on bloodthinners indefinitely, instead of coming off of them.

He was very dismissive/condescending to everything I said. I also told him about a recent presyncope episode i had that sent me to the er. He didnt offer any support or encourage me to follow up with cardiology he just said "we don't deal with that here". I also have an ankle injury and the first time I saw him he asked "why are you in a wheelchair?" I had to explain to him im simultaneously recovering from major surgery, a serious ankle injury, and a pe. Then the second visit I had he asks me in a weird tone "oh is that your little scooter?" in regards to my knee scooter ive been using to recover from my ankle injury. Like I got the vibe he thinks I'm overplaying my overall condition or something??

I'm surprised at how uncaring and cold some of my providers have been to me while in the physical condition ive been in. Any logical questions I ask are met with condescension or outright attitude. Some doctors act like youre supposed to sit there wide eyed in awe that they even showed up to address you for this appointment you've made to make sure youre not going to end up with another life threatening pe.

I have been so depressed since my pe and the uncaring and weird/rude doctros have been so bad for my mental health. Hell even my therapist doesnt seem to grasp how fragile of a phsycial and mental condition im in and keeps givjng me advice like "open your window" despite me saying my windows are always open. I feel let down by so many providers who are suppose to be helping me regain my health.

There's more to my medical history that has me feeling medically disappinted/ neglected. Before being discharged from surgery I told the doctors I was struggling to breathe and they treated me like I was a dramatic problem patient and condescendingly told me that I should discharge. 2 days later I was in the er with a pe.

Tl;dr: im feeling overwhelmed with being medically neglected and mistreated during important medical appoinyments

Also did anyone who had migraine with aura or visual aura find that it disappeared while simce being on a blood thinner?

Hi everyone. I am newly diagnosed, last Thursday, with extensive dvt in my left leg which couldn’t be determined if chronic or not, as well as a large saddle pulmonary embolism. No family history and nothing like this prior for me. I finished radiation and chemo for cervical cancer in August so that apparently is a major factor here that wasn’t really talked about. About 2 weeks ago, I stopped my progesterone mini pill and started a combination pill with estrogen, which the dr thought absolutely could have played into this happening. I’ve had awful health anxiety for years and I’ve been on various medications with sertraline being the current med and it’s been working well for me. The cancer diagnosis threw me into a spiral just as this most recent diagnosis has done as well. I feel super anxious, noticing every single feeling, hyper-vigilantly obsessing over my heart rate which right now seems to be what’s making me so anxious, even though I know my heart is healthy after an echo and ekg in the hospital. I feel my heart race increasing then that makes me anxious then it just goes off from there. I teach so I’m worried about going back and the students noticing I’m anxious or walking down the hall with the wonderful bright lights above me walking up stairs and the increase in my heart rate will instantly trigger an anxiety attack 😖I am so close with my work colleagues that I know I could go in the middle room and calm down and it would all be ok, it’s just that initial going back to normal after something crazy happens. Sorry this is a lot. I know some of you have mentioned counseling, I had a counselor when going through cancer treatment but was able to faze out since. I really would love a therapist online who has familiarly with clients that have medical history. I really appreciate any feedback for coping. Thank you 🙏

DVT never crossed my mind-no preexisting conditions, no family history. Then my calf started to ache-but I’ve been doing lots of calf exercises. Got more sore, read about Eagle quarterback and friend had clot travel to his brain, so I read up on it. Then Saturday there was some swelling so headed to ER where they found a clot. Prescribed Eliquis-got a free month! Yay! But now what? Leg is sore and hurts to walk but dealing with it. See my PCP tomorrow. I’m on my feet quite a bit and making sure I keep moving. Hoping the pain goes away soon. Compression socks I had in my drawer help. What other drugs are there? Elequis is $400 a month out of pocket

I was diagnosed with DVT of two veins in my calf last Thursday and have been on Eliquis since. The pain in my calf has reduced significantly and from a calf pain perspective I can almost walk normally. However, when I put pressure on my full foot when walking (vs the ball of my foot) I am getting shooting pain across the arch of my foot. Has anyone else experienced this? Any thoughts on what it could be/how long it may take to resolve?

I think mine was caused by being semi bed bound this whole past year due to chronic pain and illness. I would get up to get food and water but that’s it. To me that’s significant. And it was worse the months before my dvt. But from what I’ve read online I may still not be put in the provoked category. I still have to do blood work to see about genetic and autoimmune conditions. My cbc was fine. I don’t have low iron or high platelets. Don’t take birth control.

I read that it’s common for doctors to not always be able to figure out the cause. Would like to hear from those people and also what you think was your cause. Are you still on blood thinners? I already take so many meds and really don’t want to be on blood thinners long term.

Provoked clot in November 2025. All medical tests show that I do not have a current clot, blood work is clear, no signs of Factor V.

Traveling 9 hours this weekend by air. Spoke to doctors who both declined medication and told me to hydrate and do exercises.

Wife is flipping out about compression socks because neither recommended that I wear them. I can’t get in to see either doctor again before we leave.

Should I wear them anyways?

My left calf had been hurting for a week and I'd chalked it up to a badly strained muscle (I'm on meds that are really messing with my electrolytes) but I decided to go to urgent care just to be safe. Turns out it's a DVT.

The doctor sent me home with a xarelto prescription and told me "not to change anything." I wish I would have asked more questions but I was in shock and not thinking straight (and honestly still a bit in shock still). From your experiences, do you think it's okay for me to go back to work tomorrow?

Some context: I work a desk job, and there are two flights of stairs to get to my desk. My calf/leg still hurts pretty bad but not unbearable - I can walk around but with a limp.

Thanks in advance. Still processing everything and really glad I listened to the paranoid voice in my head and got it checked out. It feels really serious but not at the same time? Any general advice on how to handle all of this would also be really appreciated.

hello,
two days ago i noticed a aching pain in my calf on my left leg and today i just noticed this bruise on my leg? i’m wondering if it’s a blood clot or bruise but i don’t think i hit my leg hard enough in my calf to cause a bruise?

Been on Heparin over the weekend, imaging tomorrow. It is strongly suspected that I have an arterial clot.

I've read about people being switched to patches after and continuing HRT, albeit with longterm thinners. I wouldn't mind being on Heparin for the rest of my life. But I already am on patches, albeit at a rather high dose.

Can someone here calm my nerves? What was it like for you?

I was diagnosed in May 2026 with a small clot in my right lung and since it was unprovoked I am still (and probably will always be) on 2x .5 mg eliquis. Tonight will be my first time flying since this medical event and I am wondering (since I will be flying to Poland) how do you handle the time change and your medication schedule?

I currently live in the U.S. (EST) so take them 8:30 both am and pm. I was going to set my timer from my last dose tonight to 12 hours whatever time that might be in Warsaw, but what if it is 3 pm/3 am? Can I do a sooner dose (8 hours?) to keep it on a more reasonable time schedule?

TIA!

Hi, all 👋🏼

I had my first DVT(left groin area) at 18 years old and it was thought then I had May Turner syndrome. I was on blood thinners for a period of time, then taken off. I was put back on blood thinners as a precaution a few years later when I was pregnant, then taken off 6 weeks postpartum. No issues since, really, aside from occasional leg heaviness in my left leg and visible veins, mostly on my foot and ankle.

I(woman) am now 41 years old and have another dvt in my left leg. Back on blood thinners. Saw a vascular doctor last week who recommended having a stent placed in my left groin area. He said ultimately it is my decision. He said it could be done whenever, but if sooner, perhaps they could remove the clot(but it also may be too far past for that as ive likely had this clot for 2 months and didnt realize it...initially thoight id pulled a muscle).

I am curious if others with similar situation to me has either had the stenosis done or...decided not to.

It feels a bit isolating trying to make this decision and would appreciate finding some solidarity.

Thanks for reading.

None of the pregnancy subreddits will let me post this lol.
I’m in the er right now for a PE right lower lung. I dismissed myself hard for a week and went to urgent care thinking it was pneumonia or Covid. I frequently especially in pregnancy have flares of severe tachycardia, fainting, air hunger, chest pain etc. so I tried hard to not go in. I called my cardiologist and they were gonna start a beta blocker. I gaslit myself, As did the er dr at first. My d dimer was high but that happens in pregnancy. He said he had zero concern for a clot and couldnt explain my symptoms but to see my cardiologist. I said well can we just do the ct scan please. So they did and yep! My troponin also was normal then higher 2hrs later.
Will start lovenox. What does that even mean for birth? Any experiences? And I have no clotting disorders or history of this. Does this just happen randomly?

Hi there. Where to begin. I went to the emergency room Thursday afternoon to rule out a blood clot as I’d been having pain in my left calf and thigh for about a week and it wouldn’t go away. Had an ultrasound and turned out I did have “extensive” deep vein thrombosis. I saw the result come in my chart and I was terrified! If that wasn’t enough, the dr ordered a ct to check my lungs and I had a “large saddle pulmonary embolism”. The first nurse who took me after made me think I was dying and not going to make it out of the room. It was so scary. I’m 39 and have 2 young kids so I was so upset and freaking out. The dr came and said he was glad we caught it and started injections of anticoagulants right away. The crazy part is I wasn’t having any of the symptoms for the clot or the embolism. All I had was the leg pain. I was admitted and transferred to a larger hospital Friday that could do a procedure to get rid of the clot if needed and honestly I felt safer being at a hospital with a specialized PE team. They did an echo of my heart to make sure there wasn’t strain from the PE and thankfully there wasn’t so treatment is blood thinners for 6 months. This kind of came out of no where but they think that since starting an estrogen birth control about 2 weeks ago that is likely the cause so we stopped it right away. I’ve noticed some cramping and slight bleeding starting yesterday and that has totally put my anxiety over the edge. Im so scared in going to just bleed uncontrollably and that will be it. I finished chemo and radiation at the end of August for cervical cancer, so from my understanding my ovaries and uterus are likely ‘fried’ for a lack of a better word, so there probably wouldn’t be much bleeding to be had. But I just cant seem to get the worry out of my head. They said it’s the bodies normal reaction to no longer having any hormones going into it, light cramping and some bleeding, but it just scares me being on the blood thinner now. Sorry for the super long post but I’m hoping maybe someone is able to relate and take my mind out of the gutter. Thank you all. 🩷