r/ClotSurvivors

I've been on Enoxaparin injections since mid March due to a small PE only in my right lower lung. This is the very 1st time in my life. Ik i was told to drink fluids and all. So I was drinking almost up to a 100oz of water a day. What was happening is i was getting lightheaded and Vertigo kicked in full speed ahead. Like I was in an earthquake. Been to the ER prob 4 or maybe 5x within the past month bc of this. I was never directed to be drinking Electrolytes as well to keep my sodium at a normal rate. I pretty much washed it away with too much water. Has this ever happened to anyone else?

Sorry im unsure what the medical terminology for the ballooning to open the arteries is called again. Im 3m pp and yesterday I had a procedure to have my clots removed and to open the arteries due to having MTS. The doctor said my clots in my thigh have dissolved and that the one artery he had trouble getting to because it collapsed. He wants to do a stent in another artery to help with blood flow but hes wondering how that will work with future pregnancies. ​I have so many questions. What is the reason for not going in my calf area and how do I know if those clots also dissolved? Has anyone else had pregnancy related blood clots and had a stent placed for MTS and the pregnancy went okay? Im so scared hes going to tell me I cant have anymore children in the future.

I went to the ER after a week of on and off pain in my left leg. I measured my thigh/calf and my left leg is a half inch bigger than my right in both sections. I kept trying to ignore it and say “Oh well I’m not active enough. That one day I had to squat outside to pee might have started the pain it was the same day it came up. It goes away after I take ibuprofen. Feels better when I massage it.” But today I can barely walk. The pain hurts! So I finally go in and they seem like they listen to me and aren’t brushing me off since I’m only 31. I do have POTS which causes poor blood circulation, low blood pressure and blood pooling in my legs. They did blood work and an ultrasound on the leg that hurts. They didn’t see anything on my ultrasound but THEY DIDNT DO A D DIMER TEST! All because I have no other symptoms. Like no trouble breathing or pain in chest. Am I good? Is an ultrasound alone good enough? I honestly don’t wanna fight with the doc and am happy to just go home. I’ve been here for 4 hours now.

21, diagnosed with May thurner, hyperadrenergic pots. I was rejected a stent by 2 vascular doctors due to being too young for a stent. They both told me the side effects of a stent was way too much and they didn't want to take the risk of placing a stent in a 21 year old who seemed 'healthy'. The symptoms I get is pain between my upper thighs near my pelvis, pain on the sides of my thighs, sometimes glute pain, pulled leg and pain. I've had zero DVTs so far, and thats a reason they've declined a stent.

If anyone has any advice please offer. My blood circulation is pretty bad and I get a ton of symptoms that show it, along with seemingly low blood volume. My hope was that a stent would help improve blood circulation so that way my body could recover.

Hey all!

I was wondering if anyone here (I’m sure there’s at least one) has had an MRI done for the sake of clotting. They’re trying to find possible internal causes since genetic was ruled out.

I’m very nervous. I’ve heard so many scary recounts from people and want to be as prepared and calm as possible for next month when I have to get it done. I’m known to have high anxiety (I take 100mg of sertraline to mellow it a bit).

If anyone knows in particular about the following this would also help a lot (I am in Alberta, Canada):

1. Would I be allowed to bring some sort of stuffed animal with me? Search provided mixed results and my health websites don’t say anything about it. It doeesnt have metal! I just feel like a comfort item in the tube with me would help me stay grounded.

2. What kind of music do they have you listen to? I’ve heard they provide headphones.

60M Day four home after a ten day admission for lung infarct, PE, and sepsis. Here’s the issue, I can’t walk more than 20 feet without getting short of breath. How long does that last? Not gonna lie I’m getting tired of it lol.

Hello! Please get genetic testing done before starting a new medication! It could save your life. I’m a twenty-two year old woman who back in Mid-November 2025 had started taking an estrogen based birth control (Yaz) to help with heavy periods. Forty Days later, I had to go to the ER because I was in extreme pain and felt like I couldn’t breathe. At first the doctor assumed it was a panic attack, asking what I was “so stressed about”. I insisted that it wasn’t that and turns out… I was right.

I had clusters of blood clots in both my lungs. So much so that it was causing right heart strain and liquid to start forming around my heart. The clots led to infarctions, meaning that parts of my lungs died and my lower right lung collapsed slightly. While all this was happening, I had to get a ton of tests done. My mom asked if I could get a genetic test done for my heart. Turns out, I actually have a recessive gene for Factor 5 Leiden, a blood clotting gene.

Birth control is known for causing blood clots. Yet, it’s not mandatory to get genetic testing done to make sure it isn’t deadly. My gynecologist didn’t think to check and the ER doctors didn’t think to check either. Thank God my mom is in the medical field and thought to ask. It scares me that someone else could be in my position or worse… Not even knowing what happened. So please take this as a sign to be cautious! Advocate for yourself, it could mean your life.

It’s been four months since it all happened and I’m doing okay! I still have some struggles, but that’s to be expected. If you have any questions, please reach out! Or if you want to talk about your experience also. It’s nice to have a community here to talk about it. :)

(Ps. It’s funny now, but almost dying a virgin because of birth control is irony not lost on me.)

Anyone else? This one is bad. They seem to be lingering longer and getting worse everytime. Has anyone else gone through this? Should I have it checked out or is it normal? This one is larger than a half dollar. It’s super tender as well.

Hiya,

So I had a PE around 9 months ago, I was home a lot of the time and generally away from being exposed to germs while building up my strength. I'm in uni now and need to get public transport into the city because it's so far away from where I live, but the past twoish months I have been sick more times than I can count. I think all up I might of had a week where I haven't been sick, I just seem to be picking everything up now matter what.

Early April, I got sick and took me two weeks to get better, I had maybe three days where I felt normal then I got something else that turned into a chest infection, got rid of that, then was well enough for a week and now I'm sick again!

I have been taking a lot of precautions. Lots of hand hygiene upkeep, I'm just about always wearing a mask in public, I social distance where possible. I do think my main downfall is having to use public transport which is a massive pain.

Has anyone else had the same with a PE? I can't seem to shake anything.

One of my teachers, an old registered nurse told me that it's likely the area where the PE happened is inflamed and that makes you more susceptible to getting sick. It just doesn't seem to matter what I do to prevent getting sick, its always happening

Plus, being sick post PE is way worse than before? I will have more issues breathing when moving around, I'll be coughing to much to walk from one side of my house to another, but when I'm not sick it's fine? Ah well, looking forward to hearing from all of you :))

Thought I had a calf strain from gym, finally went to walk-in today as it had been a few days. They sent me straight to ER. DVT in right leg. Currently on blood thinners for 90 days and bed rest for the next few days with leg elevated. Referred to Hematology unit for testing to find root causes- not obese, not a smoker.

Kind of scared.

My 7 year old just through a volleyball across the pool and hit me in the head with it. I didn’t get knocked out but everything I’m reading says to go to ER? I’m on eliquis 5mg 2X daily. What should I do?

Hello! I just had a PE 2 weeks ago and it involved a lot of pain with breathing. The pain was much better by day 3 after getting treated, and for about a week I had very minimal pain. Over the last few days, the pain has started up again- fluctuating intensity and locations.

I’m wondering what other people’s experiences with post-PE pain has been? I haven’t gotten much clarity online or from my doctors on what’s normal vs concerning during PE recovery

Thanks for sharing :)

I was diagnosed with bilateral PEs April 25th and have been on Eliquis ever since.

I have constant pressure headaches that don’t go away. Horrendous upper/lower back/shoulder pain. Feel incredibly spacey. Nauseated 90% of the time.

I have expressed this to my PCP, my cardiologist, and hematologist- they all tell me that Eliquis doesn’t cause these side effects. Take Zofran and Tylenol.

I have to be on Eliquis for six months, and I am not sure how much more of this I can take. Its very hard to function.

Anyone else going or has gone through this? How do you convince your doctors you aren’t crazy and it’s really affecting daily life?

EDIT: Was told I am not a candidate for Xarelto due to my lupus and heart stents.

Female 45 have chronic pancreatitis fatty liver disease high blood pressure a habit of growing cysts on my organ Lyme disease and a portal vein thrombosis. I was diagnosed with PVT last September. Have yet to see hematologist. I have been on enoxaparin injections twice a day since then. My first appointment with hemo is the 29th. I have so many questions and don’t know where to start. I went to the ER last night for liver inflammation due to the antibiotics they put me on for lymes disease. They didn’t keep me just changed the medication. Anyway the radiologist said that the clot looked larger now than the last scan in November. Is that normal? Should I message for an earlier appointment I’m at a loss. Has anyone else had this happen? What were your experiences? What should I ask the doctor?

I had a DVT and PE 2 years ago. Barely survived. Found out I was Protein S Deficient and since then we have assumed it's on our mother's side, though haven't confirmed it yet.

My mother (68) suddenly developed really bad muscle pain in the back of her left thigh and it's radiating down the leg and she's having trouble walking. She already has arthritis, varicose veins, neuropathy, her muscles are bunched up in other leg too for awhile but this time her pain is severe. We were thinking it's due to one of already existing conditions. But today she asked if it might be a DVT. Painkillers are having an affect. I remember they didn't do me any good with my DVT pain.

Also her foot and calf is not swollen, thigh not swollen.It is painful to touch but no redness.

I'm freaking out when she brought up DVT and can't sleep now lol. Can there be a DVT with no foot swelling? We're going to an orthopedic today but wondering if it's better to get a colour Doppler done first and fast to rule out DVT.

I've had Vertigo since I was 38. Went to a Balance Therapist which helped. Im now 57 and was diagnosed with a PE in my lung & nowhere else. Been on Generic Lovenox since March. Was on 60mg for a few weeks but had to lower my dose to due blood in urine. Im now down to 40mg which has helped with that stopping. Now Iam getting Vertigo a lil too often that ive had to go to the ER. Wondering if my dosage is still high bc of this. Any have opinions? Any and all opinions are appreciated 👏

First diagnosed back in Feb-2026 with DVTs in my left arm, it's since worsened despite taking Eliquis as directed. Last friday, 5/15, I went back to the ER for similar symptoms in my right arm and was diagnosed with DVTs in that arm too.

I'm in my early 30s/female/family history of DVT and, despite my username, I no longer smoke/vape anything, cleaned up my diet, have been more active since the initial diagnosis. I take my Eliquis consistently and have had no surgeries/trauma/injuries that could have provoked this. Once again, my hematologist doesn't see any urgency in the matter and told me to just wait 3 weeks for my next appointment to discuss. I'm awaiting labwork results, including genetic testing.

Has anyone else experienced bilateral DVTs? Does anyone have any advice on what to bring up to my hematologist at my next appointment? Is there any more testing or workups I should advocate for myself?

I’m on apixaban 5mg twice a day. Someone left a kitchen cupboard open and as I stood up I hit my head on the corner quite badly. It jarred all of my neck muscles in the process. I wouldn’t think twice about this usually. But hey ho I’m 28 days into blood thinners - do I need to get checked out? It’s nearly bedtime here.

Please help.

Hey everyone! Looking for a little bit of advice here re post clot anxiety. When I was 17 I had DVT in my left leg and PE, they said it was fron the pill I was taking at the time and havent had it or a clot done thankfully. I did the whole compression stocking thing and blood thinners (not using anymore) and I was told I may end up getting post thrombotic syndrome. They were spot on, my left leg is still larger than my right and I have a lot of issues with it.

Anyways, I have crippling anxiety from the symptoms associated with the clots, and now whenever I feel a cramp in my leg, or feel it is running a bit hot or even when I have a simple cough, I go into overdrive panicking about it and checking repeatedly.

My questions are:
- what have you found helps with soothing anxiety related to this if you experience it?

- And have you found anything that helps calm or manage symptoms of post thrombotic syndrome? (Re leg aching, swelling, numbness,etc).

37f had a PE at the end of March 2026. It seemed to coincide with my injection of a gnRH agonist, but today I spoke with a cardiologist who thought that my case is unprovoked because (even though I told him I have a sedentary job) he said that's not enough to start this sort of thing. I need a hematologist, to undergo genetic testing, etc. Then he also told me I may have some coronary artery disease which is likely genetic since it's uncommon to have placque show on a CT Angiogram at my age. He is comfortable pushing that out to the fall to follow up on. I'm scared.

I'm on eliquis. I'm also on day 2 of my first period in 2mo (February I started the gnRH agonist, by March my periods had ceased.)

I developed an eating disorder after my PE because I was scared of what I could or could not eat. I just started to get over that as my primary Dr just told me I should NOT be limiting sodium. I read though that those with CAD should limit sodium. I'm so confused. My lipids are not high and neither is my sodium. Most of the time it's even on the low end. I'm so anxious I don't know what to do.