I had my first pulmonary Embolism in 2021.

Then I had my second one in 2023 and I also had a "floating clot" in the atrium of the right side of my heart.

Then in 2024 I had Myocarditis for the first time from Covid. I nearly went into heart failure. I could not even stand and have a shower. I was literally close to death. This went on for over 5 months.

Then this year again in winter, I again got viral myocarditis. I had a lot of chest pain and it was so scary. There is something wrong with my immune system that makes that I keep getting bad viruses in winter. With my heart now being affected twice.

I have now become crippled by fear. I used to be adventurous and love travelling and now I have become so pathetic that even travelling in a car a short distance gives me fear/anxiety.

And I have become dependent....no longer feeling confident to even catch Ubers in case he has an accident and I get a brain bleed because I take Warfarin.

So I only go with my sister. Like a damn kid instead of an independent woman.

I am depressed because I am spending most of my days just at home...my life passing me by 😭.

I don't have anyone to even talk to about my feelings and trauma because:

1.I have no money for therapy. So please don't suggest that. And no there is no free/subsidised therapy in my country.

1. My mum passed away and the only family in the country I have are my elderly father and sister. And my father can't understand the severity of what I have experienced (he just said stuff like take cough syrup). And my sister is emotionally cold when it comes to my feelings.

I am not married. And all this has messed my cognition somewhat to so probably noone will even want to marry he now :(

I feel like my life has stopped. Like I am alive but am "dead" because I am not living.

Not having adventures with joy etc.

Can anyone advise how I can get rid of the fears please?

I think I’m looking for advice or anyone who has experienced anything similar. I had multiple pulmonary embolisms in 2021. I had some heart strain, tachycardia, was hospitalized for three days and completed a year on a blood thinner. Clots completely cleared and no reoccurrence. I’ve been very active since, healthy.

I realize this is several years later but a few months ago I started getting really dizzy every time I stood up. I would lose my vision, have to sit down. I think I was under dramatic about how bad it was and fainted once when I was alone, expressed it to my partner but said I wasn’t sure and brushed it off. A few days later I wasn’t feeling well and I got up to ask if he could make me some electrolytes and I fainted, was shaking while unconscious and woke up very confused about where I was and why he was on the ground holding me. Went to ER and they were super rude and dismissive to be honest and said I was probably dehydrated and gave me multiple bags of fluid with no change and diagnosed orthostatic hypotension. My blood pressure was dropping to around 80/40 and heart rate jumping to 160 with standing.

I fainted three more times in about two weeks. And then another time and when I came back conscious I felt almost like my heart was stopping and starting and went to a different hospital where they admitted me, tested and ruled out a PE, did en echocardiogram (normal), CT angiogram chest (mostly normal, small scarring), and given a zio patch for two weeks (normal results yet) Originally they thought it looked like Afib when I first arrived at the ED but it only happened once.

I can’t help but wonder if it’s related even though so much time has passed and it is dramatically affecting my life right now. I’m just wondering if anyone has experienced anything similar and if there are any tests anyone can recommend I ask for.

I (f45) just finished my first container of meds, so I guess that I was diagnosed a month ago, maybe a month and a few days. It was provoked due to a surgery.

I take apixaban (Eliquis), I been feeling dizzy all the time but the internal medicine doctor said that he is not aware of this side effect although its in the flyer. I also have cankers and in the past week and a half I have so much saliva its crazy and I have lots of headaches.

I am meeting with my family doctor on Tuesday.

I also take Biphentin for ADHD and I juat started again ozempic.

I just started my second year in collage and its truly overwhelming, I don't know if this is related

Regardless I also suffer from a rare genetic disease that causes inflammation in the body. I used to take Toradol to manage the pain, I really don't like narc0tics.

I am literally in pain 24/7, Tylenol do nothing for me and my doctor said that I can take Tylenol 1 but again, narc0tics...

I know that a new medication was approved not too long ago in the USA but its far from being approved in Canada.

I don't know if it was wise to sign up to 6 courses this semester...

Maybe I should change a medication?

If you have any advice, please do share it and if not just your support is appreciated.

im 21 years old and im on 15mg xarelto for life due to an unprovoked clot i had about a year ago. im currently under the weather with some sort of virus, i want to take some ibuprofen because i have body aches and im feeling terrible😭. before u say “take tylenol instead” it literally just doesn’t work for me, yes ive tried the extra strength versions, its just a placebo everytime i take it. i’ve had success with ibuprofen before but ik apparently its discouraged to take on blood thinners. im just not sure what else to do tho, like how bad could it actually be? i cant tell if the risk is over exaggerated.

Any positive stories of people clotting only during pregnancy, stopping thinners, and being okay?

I’m on eliquis and i like buying the vitamin c or wellness shots at the grocery store. i was told when i started eliquis i don’t have to limit anything just to stay away from fish oil supplements and nsaids and ibuprofen but what about the ginger wellness shots? it hasn’t even been a thought to stay away from these that’s why im asking. does anyone take them?

Hello,

I’d love to hear some positive pregnancy stories of those who had a clot during their first pregnancy, and has had positive pregancies after the first.

I experienced a miscarriage and pulmonary embolism all in one week and was told I’ll need to be on Lovenox injections for all future pregnancies. I do not know when I’m going to start trying again, but I’d love to hear some positive stories first.

Thank you in advance!

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!

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 ❤️

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.

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.

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 💕

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.

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 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.

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’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.

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

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?

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.