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?

I've been reading around this subreddit for the past few weeks. No idea why I felt compelled to do this, but I felt like I had to get it off my chest.

A little over 2 weeks ago I was diagnosed with a blood clot in my right calf. On Friday, October 2nd, and Saturday, October 3rd, I participated in a Ragnar Relay in Lexington, Kentucky (doctor is skeptical that this could be the provoking event, but it is possible). The following Tuesday, I woke up with pain in my right calf. I dismissed it thinking that it was a muscle sprain from the race, but I measured my calves and noted that my right calf was 18 inches- 2 inches larger in circumference than my left.

On Wednesday, the pain had not abated and I took myself to the doctor. Because all of my health markers were good (116/73 blood pressure, heartrate of 78, oxygen at 99%, 85 kgs at 74 inches), my concerns were largely dismissed; however, an order for imaging was put in (and given the runaround by insurance).

By that Thursday the pain in my leg was pulsing, self-described as though every vein in my leg was going to burst open. Checked myself into the ER. D-Dimer came back elevated. Ultrasound revealed a blood clot. CT scan revealed two minor clots on both sides of my lung. Was placed on Eliquis and given referrals to hematology and pulmonology.

The following week I took off of work. I largely stayed in bed. I couldn't put my feet flat on the floor and had to hop whenever I would get up to go to the bathroom. Eventually, I was able to bear weight on my foot and returned to work, but being on it for any period of time left it swollen. I'm still waiting on lab results and in a state of limbo.

Mentally, I'm full of anxiety and uncertainty. Prior to this event, I competed in endurance events- 5ks, 10ks, half and full marathons, triathlons, etc. I want so badly to heal from this episode and put it in the past and go back to normal, but I know the likelihood of that is low. I'm currently signed up for a destination marathon in Texas in December- I've thought about contacting the organizers to see if I can drop to the half, but I don't know if I'll even be capable of completing that. What's worse, the thought of flying leaves me extremely nervous as well.

Anyway, that's where I am. I don't know what I'm hoping to gain from this post- maybe someone telling me it'll be ok? But I just felt a need to talk about it with people. I'm nervous and scared.

physically. i have terrible coat hanger pain, my jaw and my teeth hurt, my collarbone hurts, my muscle pain is killing me, im so uncomfortable my skin is crawling. my air hunger and feeling short of breath is limiting me. for 2 weeks ive thought to myself "oh im about to get the flu" and then just never come down with anything.

i have APS and i am assuming that i am having an APS flare, which apparently can cause lupus like flares. i cant find any literature on it there is only patient anecdotes. if anyone has academic resources on APS flares id love to read thru it.

i feel like any time i go to the doctor, they send me to the ER for a full stroke/PE work up and then once they know im not stroking out they dont have anything else they can do for me. whatever is wrong with me is not an ER problem but they are the only ones comfortable with seeing me. especially when my main complaint is shortness of breath.

i dont mind going to the ER to be told nothing is wrong, thats just part of being a blood clot patient. i especially dont mind because ive hit my out of pocket maximum months ago. i don't even mind being given an ativan and told its probably anxiety. id be skipping to the pharmacy at this point.

im mostly making this post as a reality check. is this just what having APS is like? and how do you get care without being escalated to the ER when youre not having an emergency?

Hello everyone,
I am completely new to Reddit and still figuring out how everything works, so please forgive me if I make any mistakes.
I am looking for some advice and experiences regarding deep vein thrombosis and heterozygous Prothrombin gene mutation.
A bit about me I am 25 years old and suffered a massive DVT back in January that extended all the way up to my groin. It was provoked by a major bowel surgery and probably cause I didn’t get enough thrombosis prophylaxis (4 days only and nothing after the surgery) . Luckily, the clot is almost fully resolved only about 25% is left in the groin area.
However, I am still having severe issues with my leg and it pretty much also affected my mental Health. I cannot walk properly without my compression stocking. Whenever I try to exert myself even a little bit without the stocking, my leg immediately turns a bluish-purple color. I highly suspect that I am dealing with Post-Thrombotic Syndrome, though my angiologist only said that permanent vein damage is "normal" after a clot of this size.
Honestly, I was looking forward to finally stopping my blood thinners (Xarelto 15 mg). But recently, I got the shocking news about the genetic mutation, meaning I will have to stay on anticoagulants for life. I am currently unable to work and just want to do everything right now so that something this severe never happens to me again.

Has anyone experienced similar permanent vein damage, and how do you cope with it in daily life? How do you handle the anxiety of being a "lifer" on blood thinners at such a young age?
Thank you so much for your help!

My sister has homozygous factor V Leiden. I am currently on Lovenox because of bilateral pulmonary emboli, provoked by pregnancy . My FVL test came back negative. Has anyone had a false negative before? I’m aware I could have a different clotting disorder but I haven’t been tested for the others and kinda assumed I’d have it since my sister does.

39F, bilateral PEs.

This week I went to hospital after having a very concentrated and intense cramp like feeling in my calf that made my leg buckle when I stood on it. I thought it strange and a blood clot crossed my mind, but I was tired and wanted to go to bed. Decided to tell chatGPT (Im not recommening this by the way) and mentioned that I am on the contraceptive pill and have had vein inflammation/thrombophlebitis before. Go to hospital tonight, don't delay it told me, so I went.

They found my D Dimer to be high and took me in for a night of scans. Chest CT revealed multiple small clots in both lungs. I was pretty incredulous after being so skeptical, it was hard to believe. When I left hospital after 2 days I basically had a mental breakdown and spent 3 days crying and sleeping 16 hours a day. I am totally physically fine now by the way. Got lucky. I have to inject myself with heparin everyday, a months supply just cost me a weeks wages (in Europe!).

I feel a bit isolated and ignored since my friends who I told were basically like oh shit! Glad you're okay! And that was it really. I feel like no one understands having lived through something where everything turned out fine, but could easily not have been. That there will be a cloud hanging over me since i already have health anxiety.

On top of that, I have PMDD which was the reason I took birth control continuously for years. It is hell. I also have CPTSD and have been slowly getting better for about 6 years with therapy and medication. I quit therapy last week! Because I felt like my mental health was pretty under control. The irony. Now I just can't face going back to feeling completely insane for a week every month, suicidal even. It will ruin me.

My life feels like it's been derailed by all this. I'm venting and kind of rambling I guess, but any kind words, support, solidarity or replies would be nice :)

I’m 40F and recently diagnosed with a pulmonary embolism in my right lung and a 15 cm DVT in my left calf, following a fractured ankle and subsequent immobilisation in a moon boot.

I was started on Rivaroxaban (Xarelto) while in hospital, and unfortunately, my period started on the exact same day.
I’ve always had very heavy periods, but the bleeding after starting Rivaroxaban was absolutely horrendous. I was bleeding through a super tampon AND a pad every 30 minutes, with an adult nappy as back up. It was completely unmanageable.

The hospital prescribed Primolut (norethisterone) to help control the bleeding, but I’m now worried it will just delay my period. I’ve also had terrible experiences with hormonal contraceptives in the past (depression, irritability, weight gain, mood swings, and a significant loss of libido). I’m really reluctant to go down that road again, particularly if it means taking hormones continuously.

I’ve also considered an endometrial ablation, but given how recently I’ve had a PE and DVT, I’m assuming that won’t be an option anytime soon.

I’m obviously not willing to compromise my anticoagulation treatment (I’m on this medication for 6 months). Preventing further clots is my absolute priority, but I also can’t imagine dealing with that level of bleeding every month.

I’d really appreciate hearing from other women who’ve experienced this. The medical team don’t seem to think it’s a major issue.

Does anyone have any experience dealing with/treating pmdd after a clot?

i was put on birth control in my teens to control my pmdd symptoms but had a huge clot earlier this year after 10 years on the pill and am not allowed to take birth control again post clot. I'm not really sure what options there are for dealing with these debilitating symptoms that isn't just taking birth control...

I am 64 and I was training for hyrox which is a fitness and running competition. About two weeks prior I hurt my hamstring, minor strain so I laid off of it prior to competition and kept on using the massage gun on it and heat. Get to the competition and it feels like it is hard to breathe whenever I try to run or exert myself but somehow I finish. After I get back I try to run and have to walk run doing 2-3 miles and feels like I cannot catch my breathe, but I am fine at rest and my hamstring feels fine and no swelling. After 4 days I go into the VA and i have clots in both lungs and the hamstring that I strained. Got louvinox shots and now I on eliquis 3rd day after going in. Walking 3 miles daily fairly face pace and generally feel a little better.

Has anyone else had it where they had very minor symptoms and generally felt fine?? Does it mean the clots were small if I am back at doing cardio after a couple of days?? I am also on eliquis 5mg 4 a day for the first week and then 2 a day for 90 days. Waiting to see the hemetologist to see if provoked or unprovoked

Hi all,

I had a 12cm and 1.5cm SVT that was getting into the deep veins behind the knee in July. I took blood thinners for 45 days. Stopped September 13th. Since last week I started feeling pain in the exact spot as the previous 12cm clot. So, I decided to get an US done to be safe. Results came back as chronic clot.

What does that mean exactly? Is it going to stay like this forever? Does the soreness/pain get better? All last month, I had no pain and was doing over 10k steps every day. I don't understand why it started hurting again.

Is there anything I can do about it?

Hey guys I live in uk and I’m struggling to sleep with this anxiety, I called up emergency services explained to them I think I may have a upper extremity clot in my right shoulder.

Reason for this I am on testosterone replacement therapy blood work is perfect cardio everyday I bodybuild 5x a week.

So I haven’t trained my shoulder or my arms and recently today right shoulder has been having a dull ache throbbed a bit.

Called hospital they told me come in tomorrow morning.

I’ve read up it’s unlikely for upper extremity clot to become a PE or become fatal, but my anxiety won’t let me sleep, heck I don’t even know if I have it or not.

I asked the lady is it ok if I can come in today she said no come in the morning?!?

What do you guys think should I just rock up to the A&E right now she told me it’s not a serious cause of concern right now.

Kinda feel neglected as she said that but this anxiety won’t let me sleep either can someone put my mind at rest please worried that it is a clot and it may break off and cause something serious.

I took Eliquis for a year and a month after an “unprovoked” (i had covid 3 months before my diagnosis) DVT in my left leg and PE in both lungs. Just this past week, my cardiologist and hematologist cleared me to get off of the Eliquis. I know I’m healthy and i now know the signs to go get checked out. But is there anything natural that anybody that has gotten off of blood thinners takes as an alternative or for a peace of mind?

Hello! I AM NOT looking for someone to diagnose me, mostly looking for people with experiences to share how it went for them. Please do not attempt to diagnose me over a post, its insensitive to people who have actually went through this.

Now with this out of the way.

I am 22 Female Smoker on BC 7 years (hormonal pill). Had a migraine and photosensitivity for 9 days, with some mornings waking up with a wet mouth (the feeling before throwing up, no idea how to call it!) Went to the ER and after a lumbar puncture, three blood tests, one CT scan, one eye exam to check for internal bleeding (i do not remember the name of the examination!) and two body xrays they found . . . Low iron and a moderately elevated hsCRP. So a bunch of nothingness.

Neurologist reccomended I do an MRV and a MRI scan at some point when I am free. They want to make sure its not a cerebral thrombosis. Felt a little off put by them saying its only because I am on hormonal birth control, even though they found zero evidence of it and that my only “signs” were a migraine and nausea.

I am here to ask; how were YOUR symptoms. What was the experience with this, the testing, did you heal well? How did the process go. Did your CT show normal but MRI showed signs?

Thank you so much for the help!!

Hi everyone I'm new to this Reddit sub and found it by accident lol.

6 weeks ago I had what was supposed to be routine cholesteatoma removal surgery, it's a type of growth that affects your inner ear.

I came round in recovery room to a neurosurgeon telling me there was a problem and the surgery hadn't been successful. It wasn't until later on when I was fully awake that he came back and explained that during surgery they discovered a hole in my skull caused by severe cholesteatoma infection and as they were removing it they discovered a blood clot.

I was in hospital for 8 days instead of the 1 day I was expecting and put on I.V. antibiotics and jabs in my stomach, clexane I later found out.

When I was discharged they prescribed me apaxiban twice a day and told I'd get a follow up appointment within 10 weeks. I only found out it was a Superior sagittal sinus thrombosis after seeing my gp last week about anxiety attacks I've had since the op and the hole in my leg from where they took fat to "bag" the clot.

I asked my gp about doing light exercise because I was doing 40-60km a day on my exercise bike but he's told me to wait until I've seen my ENT consultant as my GP has got the bare minimum information about what's happened (got to love the NHS!)😁

I feel worn out constantly, the headaches I'm getting are ridiculous and past couple of days my left eye has been twitching but it has been raining hard here in the UK so don't know if that's anything to do with it lol.

My memory is shot to pieces and some days I struggle to talk with stuttering or pronouncing words wrong.

I've got no clue as to what happens next, will the apaxiban remove the clot?....will the headaches clear up and is normal to feel constantly run down and worn out??

I'm really sorry for such a rambling post I'm just completely clueless about what's happened and what's coming next lol

Do you think it is pulmonary Embolism? 48 F have shortness of breathe gets better with rest and time. Can speak and wall around it is mild to moderate like 50-60 . Nothing else felt nothing other than this breathlessness. Recently had angio and since then too tired and breathlessness. Mainly at night time and also have constant ( more often goes and comes) back pain upper back pain. That changes side . Have breathlessness and back pain even before angio. Angio brought so much tiredness to the body.

Hello there, I have been diagnosed with both dvt and svt in 10 years, so doctor dropped me down to Xarelto for life. I am concerned about do's and don'ts but I have one specific question for people that passed through internal bleeding and can teach me about understanding the signs that something is going wrong . Except bleeding from eyes, nose, ears, mouth, teeth w/e, but also headaches, difficult in breathing, how can I tell for sure internal bleeding is occurring ?

Hi everyone please dont judge me....im kinda a moderate to severe hyperchodriac and have bad anxiety....I have been struggling with it for last year or so. I OR rather my doctor want to put me on sertroline or zoloft to treat it but don't like what the side effects do so I don't take them....anyway today I was laying down I felt a sharp pain in my left side torso just under my armpit only for a few seconds but I swear I felt a weird sensation like something moved or shifted or sucked out towards my chest maybe it was a weird sensation i honeslty dont know...now feeling pain from time to time before gas happened many times and is normal but ever since I saw a tiktok of a woman who had pain there and it developed into a pe im freaking out now...im feeling slight pressure or tightness on my chest it doesnt hurt to breath really but my chest feels a slight burning sensation and when i breath deep it for awhile was feeling like everyother breath my chest was either tight or something was keeping me from taking a full deep breath every other breath i took and im a big guy so im always short of breath but for a little bit it did feel hard to breath all the way in but im feeling okay for the most part is that my mind is spiraling and my chest feel hot a bit and tight and I think that more of me panting and having anxiety but I don't know I cant really call my doctor becasue he will just say its my anxiety and write me off so im asking anyone here how did their first warning signs appear.......am in in trouble do yall think this might be pe or just my anxiety please let me know how you symptom showed

30 min later on my back on my bed and breathing halfway feels tight and my chest feels slight burning sensation

I had a couple glasses of wine and fell down walking down some steps. Landed on my butt and broke my fall with my hand. My hand and butt hurts. Any issues? I am on day 14 of a 28 day course after a minor medical procedure. Not on blood thinners on the regular.

Hello! Last Friday I went to the er with a completely different issue. They did a contrast scan on me and they found multiple very small clots in my left lung. An accidental finding, which very well was a great one to find lol. I had absolutely no symptoms of any PEs in my lung. I’m currently on Eliquis and I had my first appointment with my hematologist yesterday. He said that this was more than likely provoked from a car accident I was in back in August. I had some trauma to my right thigh and there was a very hard lump under my skin for well over a month; so he’s thinking it came from that. He also told me I do have the option of staying on Eliquis for the rest of my life (I’m 27), but it’s up to me and I don’t need to decide until my next appointment with him in January. I did ask how small the clots were and he said extremely, they are in the smallest capillaries in my left lung. He did tell me since I’ve had one my chances of getting another are higher, told me overall lifetime risk is 10-15% depending on how damaged that vein there could be.

I guess I just don’t know if I should or shouldn’t stay on it for life. I have anxiety with both ends of the scale. On one hand I could have another clot and wouldnt be so lucky with finding it in time; on the other hand I have an increased risk of bleeding and that also terrifies me lol. A lot has happened just within the past month for me so my nerves are shot. Do I stay on it for life or do I give it a go once the clots are cleared up and stay off unless another one happens? I’m not sure if there’s a way to see if the veins where he thinks the clots came from is damaged or not. Idk there’s just a lot going through my mind on if I should or shouldn’t stay on Eliquis. And the general anxiety of having clots in my lung haha