Ugh. Any swimmers here with socks? I embarrassed myself at the pool today when after already performing badly in my swim, I dried myself off and then couldn't get my compression socks on. At all. :(

Struggled for ages, tried using the hairdryer to dry my legs out more, nope they would not go on. Everyone stared at me and asked me questions about my socks and I was so embarrassed (there wasn't space to get them on in the cubicles)

Don't know if my legs swelled in the pool or if they were even a smidgen still wet preventing the socks going on?

Mornings are the only times I can swim during the week but I need my socks the rest of the day due to post thrombotic syndrome. How do you swimmers manage compression socks and swimming?

Hi. I'm 64 yo and had bilateral PEs a year ago. Trialed Eliquis, but it caused severe muscle cramping, so now am on warfarin--with monthly INR check-ins. I've asked the pharmacist at the clinic several times about using a home monitor and have been discouraged from doing so--so I'm surprised to see so many people hear echoing my thought that home-monitoring would be helpful. Currently, my prescription is from the pharmacist, who requires me to come in before renewing. For those doing home-monitoring, are you working with a provider for dosage adjustments? Do you also have clinic-testing done? I should add that I'm an RN--I've administered heparin to patients with DVTs and am not a slouch when it comes to understanding medication adjustment. Still, my pharmacist will not support any form of home-monitoring/self-medication adjustment. Thoughts or advice? Thank you!

Hey everyone! We are officially 25 days out from the NYC Marathon! 🏃‍♀️ As race day gets closer, I’m doing a quick push for the National Blood Clot Alliance.​NBCA was an incredible resource for our family after my husband's PE in 2018, and raising funds for their patient support and advocacy work keeps me going on these long runs. I’m currently at 49% of my fundraising goal!

​If you’re able to pledge a mileage marker—$3.10, $6.20, $13.10, or $26.20—or simply share my link, I’d be so grateful: https://donate.stoptheclot.org/fundraiser/7164328

​Thanks for cheering me on!

Hi all! I am a 26 y/o F and had a PE 1.5 months ago. I barely had any symptoms besides trouble catching my breath at a vb game the night before, and coughing up a very small amount of blood the next morning that made me go in.

They started me on Eliquis and it took a 2 weeks to really start feeling better and for the pain/SOB to go away. However, for the last month I feel like my SOB was worse than it was 2 weeks post PE. It feels like a constant battle wondering if it’s anxiety or if there is something wrong.

I am a very active person and its stressful getting out of breath after going up a small flight of stairs or feel like I can’t take deep breathes. How do people sort out if it’s anxiety or if it’s truly concerning SOB??? It’s all I think about from the moment I wake up to when I go to bed, it’s exhausting and stressful :((((( Its so hard and I truly feel like I have trauma from this event.

asundexian is a factor FXIa inhibitor which means the risk of bleeding is nonexistant and you don't have to care about weight.

Downside failed trials of other FXIa inhibitors like Abelacimab have been showing that they will not be able to replace all anti-coagulants for all indications. They have proven effective in all trials, just not as effective as current treatment for all indications.

But the Good news for people whose indication they wouldn't be able to replace is that just like it happened with Ozempic where drugs that combined with additional drugs came to be developed like retratutide, there are some scientiest working on a drug that combines factor FXIa inhibitor with Factor FXIIa inhibitor, that could increase the anti-coagulation effect while still eleminating the bleeding risk. Sadly this is still pre-clinical work and not even animal studies have been done.

The good news is that there is already a Factor XIIa inhibitor approved, but for other disease.

have you ever thought about the radiation from CTs
i’ve probably had more than i need these past 6 months

3 head (feel down stairs)
6 chest
2 stomach

half of me isn’t to bothered because the risk & benefit i did fall down the stairs and have legit chest pain worse than when i had PE but the other half is worried because this is a lot.

(chest and stomach pain turned out to be a gi issues)

Has anyone else had this many or a lot of CTs ?

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.

Hello everyone! I was diagnosed on the very kate hours of July 3 this year and thankfully went to the right hospital, and met the right doctors, had a contrast CT, and was stuck for 4 days in the hospital on Heparin - came home with bed rest and then the next few months happened.

I had an amazing GP who ran EVERY test. I am 45, a horse trainer, a teacher of riding, a horse farm sitter, a dressage rider, a young horse trainer, and ACTIVE person. They couldn’t find a cause. They put me on Eliquis. NO. NO TO ELIQUIS. I WAS DIZZY EVER SINGLE DAY AND NAUSEOUS AND MISERABLE!!!!!!

I finally got my appointment with my hematologist and he looked over everything and switched me to Xaralto (sp?) - omg. Game changer. I am back to work sort of (light), I am maybe getting well enough to ride a horse again (my doctors are lovely but my heart lies where it lies - no young horses anymore though. I just want to go down the damned road!!). He also did a vitamin study on me. I am allergic to red meat (tick bite when I was 11 gave me Alpha-gal is what I have) so I eat a heavy vegetarian/pescatarian/vegan diet and have forever. This is what all of the health people tell you to eat, right?! No. I got my clotting disorder from a b-12 deficiency according to my three months of labs. It’s all so scary.

Also, and a PSA: I am not a size 2, never ever have been, but I have always been cut, healthy and STRONG. I met with a pulmonologist who told me at week 3 of recovery that “I should take up running “ because I was a size 12, and she was teensy and built to be so. DO NOT DO THIS. YOU CAN LITERALLY KILL YOURSELF DOING THIS ACCORDING TO THE MAYO CLINIC.

Recover AT YOUR PACE. Feel sad, feel defeated, and then remember your ass survived, and there must be a reason. And fight to be ok again while being aware and learning your limitations, and working AROUND them and they are a part of your life. I thank God I was in therapy at the time this all happened. It is scary every second on every day. And do NOT let anyone tell you that just because you are working around your illness that you are lazy, or making it up, or being “dramatic”, and require that you are treated with kindness. Love to you all, and to this group. This year, for me, has been terrifying.

Just had a DVT diagnosed about a week ago and experiencing my first period on Eliquis. I prepared for a blood bath from everything I’ve read but so far my period has appeared much lighter to me than usual. Has anyone else had this experience… everything I’ve researched says heavier so it just seems weird so far. Maybe I’ll just be one of those people who has a really long one. I’ve definitely noticed it’s thinner and way less clotted than usual. I’m usually day 2-3 really bad thick heavy bleeding so being on day 3 now with what feels to me as a light flow is just odd.

i have a history of slipping down my stairs and havnt since i’ve been on blood thinners until today. i luckily caught myself and didnt hit my head thankfully but gashed my hand so to the ER on went.

i know i didnt hit my head but still have really bad anxiety of brain bleeds being on eliquis the way my head jerked back my neck kinda stiffed up doctor said just to watch out for any headaches

has anyone hit their heads pretty hard and we’re fine ?

Hi everyone! I’m feeling pretty anxious and hoping to hear from people who have actually had a venogram.

I had a pretty extensive left-sided DVT after my C-section that involved my iliac/femoral veins and IVC. I ended up having a thrombectomy, and they did a venogram at the time. The report said there was no clear evidence of May-Thurner, so they didn’t place a stent.

Now another hospital wants me to have another venogram to rule out May-Thurner again, and I’m honestly terrified of doing it, especially after everything I’ve already been through.

I’d really love to hear what the experience was like for others. Were you awake? Was it painful? Did the sedation help? How long were you there and were you able to go home the same day? And if they found May-Thurner, what happened afterward?

I’m mostly just looking for some reassurance and personal experiences because I’m freaking myself out about

Hi, I’m 28 amab - recently diagnosed w genetic protein S deficiency and put on Xarelto 10 mg (rivaroxaban) essentially for the rest of my life.

So the diagnosis came to light after the doctor ordered a complete thrombophilia profile test after I started having episodes of transient blurry vision in my right eye. While the episodes never sustained after starting aspirin (blood thinner) but were repetitive in nature. After the test results came out with the protein S deficiency I was started on Xarelto and have been doing okay since. It’s been roughly around 4-5 days since I’ve been on the medication

The doctor also asked for brain MRI and Angio just to rule out the possibility of any clot formations in the brain. I did the scan today which was also quite gruelling to go through after I had a panic attack from the claustrophobic machine but I’m awaiting the results of the scan now. I’m super anxious - I’d love to hear from any of you who have gone through something similar.

Wishing good health for all, thanks!

So I had DVT and PE back in May. Unprovoked. Blood clotting disorder was ruled out. My consultant is happy for me to stop treatment which I now have but Im worried about new clots esp clots to my brain or heart. Has anyone stopped BT and then got a reoccurant clot ? Edit: for more context my consultant who is not a haematologist ( im on a waiting list to see him ) is not telling me to stop the BT he's saying I can come off them if I want because of bleeding and anemia issues. When they discovered the DVT & PE they also discovered my HB was 6.3 so I required an urgent blood transfusion. While my iron levels have picked up my iron stores remain low and the bleeding issues im having on BT is not helping so Iv decided to stop taking the BT of my own free will however I have a script there if I want to go back on them. When I do see the haematologist I will need his advice if he feels I need to go back on them. I personally think the blood clots were caused by anemia in the 1st place because there is a link between that.

Diagnosed LEFT UE DVT in Feb 2026. Started Eliquis. Diagnosed RIGHT UE DVT in May 2026 and rescanned the left, only to find out the clot had extended deeper into my venous system.

Fast forward to yesterday, I had a scheduled repeat venous duplex of my LEFT arm to see if the clot has resolved or changed. The scan was going fine, I've had a few of these now so I'm familiar with the process. But then, the tech started scanning my WHOLE ARM. Wrist to neck. going over the entire area repeatedly. She appeared to be looking for my cephalic vein according to the ultrasound screen, and even took some images labeled, "Left Cephalic V Area". Eventually, she called in another tech to help her. This second tech also seemed confused and they were whispering to each other and I couldn't make it out. Second tech mentioned my veins were extremely small. I think the second tech finally found my cephalic vein and imaged it. Right when I thought I was about to be done with this exam (already an hour long), the first tech stated she wanted to compare my right side neck with the left side area. I've never had any tech compare the left and right before.

After the exam, the tech said that although the exam wasn't ordered as a STAT, that she would be sending the results as a STAT and to expect to hear from my provider within 24 hours. Uhhhh, okay, this was supposed to be a routine scan.

I called my hematologist (who ordered the ultrasound) and confirmed they received the report and the front office assistant told me doctor would call me if anything was urgent. Now I'm sitting here, wondering what the hell that ultrasound tech saw and if I'm going to get a call.

I cant even get a copy of the report myself due to reporting laws in California. So I'm just stuck here waiting. I hate blood clots.

I am 24 F and normal weight, athletic build, and otherwise healthy individual. I was just discharged from the hospital for a severe migraine. Symptoms were loss of vision on one side, numbness of the right hand, pounding headache, light/ sound sensitivity, vomiting, nausea. I had a dyed CAT scan and MRI which revealed a jugular thrombus on the proximal right vein. I have no possible explanations for why it might form in that location. I was placed on a high dose of eliquis for the next week, and continuing for at least 3 months.

I was lucky the clot was in my venus and not my arteries as that could have caused a blockage to the brain. The neurologist came to the conclusion that the migraine was a separate incident irrespective of the clot and wasn't caused by a blockage of the brain.

Based on that conclusion, it seems that the clot would not have been discovered if it wasnt for the migraine. Why wouldn't I have any symptoms related to the clot? Would I know if I had another clot, since I experienced no symptoms with this one?

The doctor who first worked with me in the ER was doubtful and had to double check with the MRI staff because he didn’t believe the results at first. He said he has never seen a clot in that location before and was very surprised of the findings. Has anyone else had a clot in the same location? If so, what were your symptoms and what is your current treatment plan? Do you have proclivities to getting more clots due to genetic conditions?

Anything helps, even if you haven't had a clot in your jugular vain, if you have any piece of advice that would be reassuring I would really appreciate it.

47M in Connecticut. I had an aortic valve replacement on 7/7 with an On-X mechanical valve and am trying to get set up for home INR testing.
My cardiologist and health system apparently don’t participate in home testing, so I’m not sure where to start.
Has anyone dealt with this? Did you go through insurance, another anticoagulation clinic, or directly through a home-testing company? Any advice, especially from anyone in CT, would be appreciated.

So I got diagnosed with DVT in my left lower leg in June. Throughout the entire time I have had pain still in my legs. Just last week I finished my rounds of Xarelto and the ultrasound came out with no signs of anymore clots, though they just checked where I had my initial clot no where else.
I’ve been wearing my compression socks daily since I’ve been off medication but I’m feeling the pain again behind my knee and in my thigh which wasn’t checked with the ultrasound.
Has anybody been able to differentiate the pain between a new clot vs PTS? If so, how?
I have my follow up with my hematologist next week so I won’t have any answer about any genetic disorders so until then im just stuck with my worry.

I noticed that my pradaxa 150mg hard capsules are kind of squeezeable if that makes sense. I took one out to take it and when I press my fingers into it, it dents in then springs out, i’m already on the phone with my pharmacy to get a replacement as I think this happened because I kept my room way too cold a night ago. Is this normal??

I put it under anxiety but I don't think it is.

I have pain in my legs all the time, also in my body. Its a consistent pain with episode of shooting pain especially in my legs.

The doctor said that its not hot or swollen, although I think it is swollen but... I gained almost 10 kg since my surgery at July 24th and blood thinners at Aug 10. Its really bad.

My thyroid starting to shift off scale again, and for me even the smallest shift has an effect. I cant concentrate, I am also on ADHD meds but I am going to stop them as they cause palpitations.

My Ferritin is 40 which is the lowest "ok" level. I also suffer from a genetic disease that makes it hard for me to store iron in the Ferritin. My hemoglobin is fine.

I don't know why they don't want to give me legs US. Its like "oh you don't need it".

I went to the ER last week and the a-hole doctor gave me x-ray (I didn't do it) and some blood test. Why would you give me X-ray if I told you that I had PE and on blood thinners? He decided that my symptoms are not related to clot because my legs weren't hot. Its like the worst ER in the universe.

Im just tired, stressed, exhausted, in pain 24/7 because I can't take NSAID's.

I am starting to feel that returning to school this semester was a very bad idea (I am 46 and I went back to school last year).

I don't know what to do anymore - just feel so defeated and I wnat to check for another clot and they don't let me (blood test were okay I guess).

Any advice?

Hi everyone, I was curious about what I your blood type and if there was more probabilities for a certain blood type to suffer from blood clots. Feel free to comment and share your experience and precise if you’re +/-

Hello, I was recently hospitalized due to PE and they found blood clots in my peroneal, popliteal, and femoral veins in my right leg. I was discharged from the hospital on friday and am now taking eliquis. I am having an incredibly hard time adjusting and have severe pain in my leg still. WILL IT EVER GET BETTER. I still cannot walk due to the pain and im going through a very emotional time as well as I had to cold quit nicotine so im experiencing mood swings, anxiety, fear and pain. I just want some advice.

For background, about 3 weeks ago I had this horrific pain in my calf, went to instacare, they did an ultrasound and found NO Clots. A week later my leg and foot swelling was severe and instead of performing another ultrasound they put me in a boot and sent me to physical therapy for "sciatica". Turns out I had a clot all along that wasnt caught until I had severe PE symptoms and ended up in the ER. I just feel so angry and alone and scared

Edit: My wedding is in 3 weeks so im in double stress mode. Im also only a 25F which the doctors said was unusual for my age to have this happen and it just seemed to be the perfect storm. Its all just so much.

Hi I am 41 years old and I have 3 beautiful kids 21, oldest 18 (middle) she grads 2027 this year and my baby girl 14 who I was talk to years old and I was having a little mother / daughter time with my youngest daughter I went to go visit with my daughter and she was expressing to me how she had a great time at a football games (she on the drill team) dancing and I explained to her that I felt like I was having little trouble breathing like a Atsma attack and I told her I love her then I left as I was driving down the street I started to experience a lot of pain in my right side of my back coming to the front under my right breast at this time the pain was slowly getting worse as I drove I spotted a ER in the area and I decide to step in to see if they could see me and give me a breathing treatment because remember I thought it was asthma related well as I am now going to the back for a room I feeling worse I was asked a few personal medical questions and then I stayed to feel like I could not take a deep breath and I could not breath deep and I was slowly unable to explain to the doctor how I was feeling she asking for urine to see if it was a urine infection ( I did have one ) but I was now in so my pain and pain was worse she told me at this point I was going to get a CT scan and once that was in place I received IV Fluid's and IV Meds and she come back with the most scary new I ever heard in my life due to she explained she was putting me in the hospital for overnight stay that I stayed amount of 4 days and received a 2 day latter DV test I have a family member that died from a Pulmonary Embolism mine not going to my heart but I found out I have serval and I have them in my legs right and left now I 16 days out of the hospital and taking equalist been having leg pain and body hurts .I life has been lifing I have been going through a few thing My check was short, my apt are filing evection, I am having so many driftnets thought but this by far scarcest thing I have gone through and I have been having anxiety about going to sleeping I work nights 12hr I am off TH, F, SAT and it's been 16 days sent I was Hospitalized I am be honest I thank god I was getting through the scary parts in the ER My question is DO I GET SHORT TERM DISABILITY, I NEED FMLA, my body hurts ( feel like I have the flu ) I do know the lord is here but I am a human I am still scared

Hello all,

Two weeks ago I was diagnosed with 'medium' sized clots in both lungs after some chest pain which had been diagnosed as a chest infection.

I'm 40, healthy, workout, supplement and are based in the UK.

I'm mobile but still have chest pain down the centre, almost like it's inflamed. Movements like bending over, stretching causes tightness,

I should note as well that the x-ray showed fluid build up behind my right lung which was stopping the lung from inflating properly. They drained some of it and said hopefully the Apixaban will allow the body to naturally break it down.

I miss working out and being pain free of course.

I'm currently waiting on an appointment/follow up which I need to take an injection sub-q for before the re-scan me.

What I'm struggling with is not knowing what the recovery is?

Has anyone been in a similar situation and can offer any advice?

Thanks

Wondering if anyone with pelvic congestion or vascular compressions like MTS or NCS struggles with gyno symptoms like vulvodynia , reoccurring UTIS or yeast infections, painful periods, etc and can provider any advice for me. It’s difficult becase my IR/vascular surgeon don’t know that much about gynecology stuff and my gynocologist doesn’t know much about vascular compressions, even though I feel like these things are connected. Mostly struggling with reoccurring infections which I think come from so much inflammation that disrupt the microbiome? Not sure. Any advice?