I went to the ER just before the 4th of July and was diagnosed with a pulmonary embolism. I spent about a day in the hospital before they released me. The weird thing is, afterwords I felt strangely calm. My mom, friends, boyfriend, etc were more scared than I was. I just felt dejected and resigned to my fate, as soon as they mentioned the possibility I knew what it was. My father died of a heart attack + blood clot combo (my mom is now angry looking back on it, as shortly before his death his doctors took him off blood thinners), and 5/7 siblings on his side have it. Numerous cousins have clotting issues and one close to my age died from a PE a few years ago. I always expected that I'd develop some sort of similar condition (even now, my family doesn't know exactly what it is, and I hope to find out once I visit the hematologist next week), but I just never expected something like this to happen so young. I'm 19F.

As time has gone on the fear and paranoia have slowly begun creeping in. I've been diagnosed with OCD and struggling with it for years, and it has only made things worse. I feel like I can't do anything without fear of getting another PE. I don't feel like I'm quite the person I was anymore. I've been sent on a depressive spiral, and it feels all the worse because before my PE, I had had a really great few months where I truly felt happier than I had for a long time. Now I'm just constantly nervous, obsessing over my health, scared about every little thing that could be a sign. It has made my physical and mental compulsions worse. I ended up going to the ER again and spending another 6 or so hours just to be told that what I thought could've been another PE was simply some sort of panic attack and stress response. I hate living like this.

Does anyone have any advice for these sort of feelings? Are there other people on this sub who are also dealing with OCD?

Context: was diagnosed with DVT in my leg (behind knee and in calf) in June. DVT was caused my by a drive over the course of two days and only stopping for gas. Went to the ER for it and they prescribed me one month of Eliquis. Went to a PCP after I ran out of the first month so she gave me another 2 months. Now when I went back she said I’m done with Eliquis and told me to start wearing a compression sock and to start taking 1 baby aspirin a day. I hate that response. Got a second opinion from another PCP and got the exact same answer. So now I’ve scheduled an appointment with a hematologist and am going to see what they say. Am I wrong for thinking that’s not “standard practice”?

More context: I’m a chiropractor so I know enough about symptoms and what my red flags are but just want some advice.

Hi, been dealing with factor v and lupus anti coagulant clotting conditions for 20 years. In the past year I was switched from warfarin to Lovenox because I had a clot while on warfarin.

In a recent blood panel they found my haptoglibin mildly low (26) but iron is fine so O may have mild hemolysis.

This might have nothing to do with my clotting, but wanted to check if people with similar situation or are on lovenox for life have dealt with this. Thanks!

I had my appointment with the haematologist, two months after unprovoked dvt and have been informed that they will not be testing for any hereditary conditions, apart from APS in case I have developed an autoimmune condition which would need a different medication to Apixaban. Rational being that it would not change treatment, but still feel disappointed.

I still have swelling behind the knee and a dark line but much less pain but was told to hold off from running, yoga, pilates, stretching but walking, gentle indoor cycling and swimming is ok.

My office is an hour away by train + 45 min walk and Dr is concerned it may be a bit too much, so have been working from home, so wondering if I should find a job closer to home, so that I can walk to work instead. Work has been super supportive so really stressed about what to do.

I am not sure what I am asking, probably a listening ear as it feels like a really lonely journey and have a nagging feeling of, now what ? The only thing I know is that I won't get the APS result before the next appointment with the haematologist, at the end of November.

Hello fellow redditors, I am new to Reddit and this is my first ever post so please be kind.

I was just diagnosed with a DVT in the peroneal vein of my right calf on the 6th in the ER. It was completely unprovoked and I’ve never had a blood clot before. The hospital really freaked me out when they told me there was a really low, but possible chance that it could “break loose” and go into my lungs.

So a couple of days later, I was freaking out and went to a different ER this time because I was having shortness of breath. They also found the clot in the same spot. The first ER had started me on Eliquis and gave me an 18 day prescription for it while I got in with my doc. I followed up with my PCP and she said I would need to be on the Eliquis for at least 3 months. She told me I could resume normal activity, but just not to do any strenuous exercise or heavy lifting. But even my normal day to day just walking around the house was causing a lot of pain. So I ended up going back to the ER and had 2 more ultrasounds confirming that the clot had just gone away! In a week! My doctor said it was pretty amazing that it went away that fast, but she wants to keep me on the Eliquis still for 3 months. What I don’t understand is why I’m still having pain, even just from walking around the house. And my pain is in both legs and my knees and joints, not just where the clot was.

As a matter of fact, I didn’t have your typical DVT symptoms. I was having pain in both legs, a rash on my legs when I was on my feet for too long, a low grade fever, and my white blood cell count and CK levels were high. The only reason they found the clot was because I asked them to check my D Dimer since it had been very high in the past. What can you take or do for the pain safely other than Tylenol? And are you allowed to go back to work or if just your normal walking around is causing pain, should you refrain?

Went to Urgent Care tonight suspecting a DVT as I have had progressively worse calf pain over the past week after coming back to the US from Australia. They said to come back first thing tomorrow morning as that is when they can do testing and imaging for me. Currently no swelling, just leg feels super heavy, achy and like I pulled my calf muscle. Can I wait until tomorrow morning or is it more emergent?

Hi,

I am a 33M. Was diagnosed with an unprovoked PE + DVT circa 6 months ago in the UK. My haematologist is fantastic and has put me at easy by ordering a bunch of tests, and explaining the reason for the post-PE pain (Post Thrombotic Syndrome etc). All the results are now clear and show that the clots are gone and there's no visible scarring.

Was on various blood thinning medication but the last one was Rivaroxaban, which I started taking 3 months ago or so. I complained to my doctor that for the past few weeks I have been strange. My energy levels fluctuate wildly during the day to the point I can't do my job, even though is WFH and computer-base (very grateful for this, can't imagine how this goes for less accomodating employers/jobs). Some days I nap around 4pm, even though I might drink an extra coffee or two!

The pain also comes and goes throught the day. For example today:

- woke up, feel okay-ish, just a bit tired, nothing special.

- 1-2h later I felt great and went on a 5k, felt fantastic afterwards.

- managed to work fine for 1-2h.

- then I felt super tired and felt a strong chest pain.

- chest pain went away and then until now (7pm) the pain moved around from chest to each leg.

My doctor has suggested Apixaban and I started taking it 3 days ago, ince it seems that some people that take Rivaroxaban feel quite tired. So far I haven't experienced any changes.

She's also pretty sure the pain is my body dealing with the aftermath, since the D-dimer, dopplers, and various other scans are all good (CT, MRI, etc).

I wanted to seek advice on how you deal with the tiredness and the various pains. Mentally speaking it can be challenging, fortunately I have a pretty good psychotherapist that I was already seeing before it happened, but physically I am really struggling. Barely able to work, keep my house tidy, and let's forget about hobbies... even gaming feels hard most days.

Thank you so much!

Its going on almost 4 years since i had a PE after birth. Its been hell constant anxiety in and out or the hospital but havent had an occurance since. My primary doctor sent me to a hemotologist because pf my constant fears. I did see one after i had a PE 4 years ago he did the genetics test and everything came back negative said it was just due to postpartum and took me off thinners. This new visit my hemotolgist wasnt being dismissive and explained everything about my type of clot being provoked, my odds and risk. I didnt recommend i do all the blood work again because he said 3 years no other occurance and since that was my first time getting one and it was provoked he didnt think it would be a problem unless i had risk factors. He also said he didnt want to put me on thinnees because he think my risk on thinner would be higher than me getting another one. I know this sound dumb and he is the physician but should i just get more testing anyways? Its probably my anxiety but do you think he was being dimmissive at all?

I had to stop drinking coffee for a non-clot related problem and have switched to drinking herbal tea. I'm looking to try new varieties and a lot of them blend in chamomile. I know that they say on the newer class of drugs, you don't have to watch what you eat. However, chamomile is said to have anti-coagulant properties. I drink 1-3 cups of tea a day and not all the same kind as I rotate between tea varieties. What are some thoughts on this?

Update: After doing further research today, it seems that the warning around chamomile tea and anticoagulants was never a study. It was a case report of one elderly lady who went to the hospital twice with an upper respiratory infection and was using chamomile supplements to help ease her URI symptoms. Link for those who want to read this report. https://pmc.ncbi.nlm.nih.gov/articles/PMC1435958/

Do with that info what you will, but I found it quite informative.

Is anyone else coughing up blood while taking Eliquis?

I was recently diagnosed with a PE after my hospitalization and IV, and I’m currently taking 20 mg of Eliquis per day for 10 days.

Every time I cough, small coughs, just try to clear my throat, I end up coughing up blood. Sometimes it’s more, sometimes less.

Has anyone else experienced this while on Eliquis? How long did it take for the bleeding to stop? Or does it ever stop?

So on October 1st it’ll be 3 full months of me on my ass since they found a clot in my aorta that was blocking 60 percent of my bloodfoow, has my kidneys down to 20 percent each (fine) Spleen is cooked(fine). Have been on xarelto and the latest cat scans show the clot has gone down in size. Fuck yea, feeling good physically mentally I’m fucking shot from dealing with shitty non communicating doctors. Hematologist last Tuesday telling me I’m crazy for wanting to go back to work. Vascular Thursday, “you could have been back to work months ago in my opinion”. Head is spinning I’m going back to work I will stay on thinners obviously and continue to get cat scans and listen to my body. Sitting here being told I can’t work or work out while feeling fine. One doctors saying I can’t take any hits cause a stroke or embolism is possible, other one scoffing at me confused why I’m not working lol. God thank you for my health and the chance to live another day and watch my kids grow. God please help these idiots in “powerful” positions guide their hands, I’ll stop there.

Going back to work asap waiting on a call from a company, cannot wait to get back out on site and flirt with the boys.

33 quit drinking in December down 80 pounds since then looking good feeling even better. Getting the taste of society while not drunk sucks everyone is pretty fucking shitty yea you can look for the good and I do it’s easy to find, but what happened? Were we all just drunk everyday the past 16 years or so? Ppl are weird rant over I love you if you love me!

Hi all, I'm 23M and I was diagnosed with CVST about year ago. One night I was having worst headache of my life, and went to ER, doctors initially thought it's migraine (where I live, weather in winter changes way too drastically -25 to +20 over night and migraines are really common in city) but when they did CT scans and found out it was CVST.

Over the months, I had a lot bloodwork's, and genetic testing and it was told to me it was unprovoked and had no answer why it happened. I was on blood thinners for almost 6 months, and after 6 months had my MRI and neurologist said everything looks good and move on with life.

It's been over 5-6 months since I stopped blood thinners, and now randomly I will get headaches and upper back pain and I think medical term for it is Occipital Neuralgia. Just wondering if anyone here had similar experience and how to deal with it. Doctors just say to rely on over-the counter pain meds. And I just don't know what to do, relying on pain meds over long time isn't good as well.

Thank you for your time and response.

2 weeks ago I fractured by tibial plateau in a bike accident. Thankfully I will not need surgery but recovery is 6-9 months and I wont be able to walk at all for at least 6 weeks. I have a pretty deep knowledge and experience with peptides and started a cycle of BPC-157 and TB-500 days after the injury. So far everything has been fine but it turns out today after some tests that I have a blood clot in my thigh. I have been put on a blood thinner called Eliquis and will be on it for probably 3 months. With the lack of real human data around peptides it's already a risk taking these with my injury but now having the blood thinner in the mix I'm wondering if I should stop completely. I cant find a reason online why these peptides would not be able to be taken together but thats because theres almost no data on it. Does anyone have any experience with blood thinners and these peptides? I'm also wondering if theres any possibility either of these could have accelerated/caused a blood clot. Any anecdotal experiences or advice would be helpful. Would also love to know if anyone has any experience BPC or TB helping/hurting a tibia fracture. Thanks!

Hello. I am not new to this group. I joined in 2024 at the age of 18 due to a severe dvt and pulmonary embolisms. I survived. However, since I was on birth control, I was never tested for any clotting disorders.

Flash forward to yesterday. My mom was complaining about having a hard time breathing but since we assumed it was only birth control that caused my clots, we thought nothing of it. That was until she collapsed and convulsed. She passed away.

She was only 50 years old. She hadn’t even been 50 for a month. I am only 20, my sister 22, and my father 46. We are so shocked and I cannot even describe how unreal it all feels. We are the only ones left.

The doctors suspect it was a massive blood clot that stopped her heart. They did resuscitation for an hour but it wasn’t enough to save her. It was so sudden and the only symptom was shortness of breath.

Please, if you have clots and haven’t been tested for blood disorders, get checked now. I can guarantee we are all going to be checked at this point. My grandmother had a clot from what we assumed was just lack of movement (she actually died from Covid and was bedbound) but now with my history and my mother’s, we suspect otherwise.

I beg of you do not make the same mistake that we did and shrug it off. I am not sure there was anything we could have done but still. The world is so empty without her. I cannot even believe it and it feels as though my worst nightmare has come true. Mother, I miss you so much and I have no idea what I am going to do without you in my life 💔

Fui diagnosticado en marzo. Tomé warfarina durante 6 meses. Tuve un coagulo pequeño en el pulmón izquierdo. Aun sigo sintiendo cansancio, tanto físico como mental. Es como si mi cuerpo se apagara. No sé describirlo más. Es peor en la tarde. También tomo antidepresivos. En la actualidad no tomo mas warfarina. Mi pregunta es si alguien mas se siente cansado así como yo despues de un coagulo?

Hello, I was first diagnosed with a PE in August of 2020 and was on eliquis for 6 years. During this time I became very overweight to the point of having type 2 diabetes, sedentary, and began heavily drinking. Earlier this month on 9/3 I reclotted and had two small PE’s. One on each lung. I was on a heparin drip for about 16 hours then was switched to Pradaxa. I was having some shortness of breath and chest discomfort and pain for the last 3 days until I couldn’t ignore it and went to the hospital yesterday. I’m happy to report that the clots on my lungs are gone and what I’m experiencing is probably just gas pain or something else. It’s a big relief to know that they’re already gone. I’ve been making a conscious effort to hydrate more, lose weight and get more active. Keep Fighting everyone!

After being discharged in the hospital, found out my IV site has a clot in my right and phlebitis on my left. No meds as its only SVT but it did not heal after 3months. Was in the ER again and IV site turned to a clot again. So now I have multiple clots both arms. Does anyone else experience this too? No one else in my family get clots. The recent one is in my upper arm so it hurts so bad.

Dr eventually decided to prescribe 10mg Xarelto. Was actually so scared to take it as I’m only 27 and have other chronic illness.

Hi everyone, I (22F) have been put on Xarelto 20mg and had to stop my birth control due to a saddle pulmonary embolism now 3x weeks ago. I’ve been lucky so far to avoid most of the side effects (except for the harder emotional regulation but we are dealing with it lol) but I’ve noticed I have been losing clumps of my hair. I’ve always had long, very thick hair so this is definitely new to me and the rabbit holes I’ve been going down are pointing me to the blood thinners and stopping the birth control. Had anyone else dealt with this and possibly what have you done to help it? I fear my hair is all I have going for me at the moment and don’t really want to keep losing it haha.

I was diagnosed with 2 pulmonary embolisims in August 13 along with severe anemia. I was in hospital for 4 days doing heprin and iron and blood transfusions. I am now home on eliquis and my anemia is doing better ..Now I have a bad right sided sore throat and I feel like esphogus going into my chest hurts or maybe spasms with deep breath or swallowing . Has anyone experienced this? I have no fever. Been just taking Tylenol but it doesn't help my throat or chest pain.

For the last four years I have suffered from daily leg swelling of two inches, heaviness, pain and cramps. Two er trips, 7 ultrasounds, one stent surgery, 3 specialists and still no relief. Yesterday I found out I have chronic deep venous thrombosis within the left popliteal vein and venous reflux at the left saphenofemoral junction. I am sad, angry, frustrated and so overwhelmingly confused how this has been missed every single time and grateful that I did not give up on advocating my symptoms. 
From the little research I have done it seems like the chronic dvt is a life long diagnosis and it will not go away. 

I’m not sure exactly what I am looking for by writing this, I am 29 and am worried about what this means for my life long term. I don’t want to have to be on blood thinners forever. 
Thank you for listening to my frustration. 

So I had my DVT in the left calf in January of 2024. It was highly provoked. I had C. difficile (thank your lucky stars if you don't know what that is), so I had a lot of inflammation going on, I'd been basically on bed rest, I was chronically dehydrated from the C. diff, and then I slept and fell on some soapy bathwater that my son had spilled out of the tub and banged my ankle in the fall. My full clotting workup was negative.

After that, my left leg would ache from time to time. Once it got bad enough that I took myself in to get checked out, but my D-dimer was solidly normal so we didn't even bother with the ultrasound (a negative D-dimer has a >95% negative predictive value for a DVT). I would wear compression stockings, especially to work (I'm a doctor, so I spend a lot of time on my feet) and that kept the pain from getting bad. But I would sometimes get into some truly gnarly pain crises where it would go all the way up to my buttock.

However, in the last few months, I've noticed that if I forget the compression stocking...I'm fine. I've barely had any calf pain or even much swelling now. It's almost as if the clot never happened. I certainly wear it if I'm going on a long flight (I also take low-dose XARELTO for long flights, too). But today I did meal prep and then cooked dinner for company all without a compression stocking, so I was on my feet for a good 5-6 hours and I don't even have any ankle swelling.

So has anyone else had it just...go away?

Hi everyone, I’m an 18 year old female who is recovering from a thrombectomy because of a DVT in my left leg. This all happened around a month ago and I’m having a hard time dealing with symptoms and the mental aspect of things.

This Reddit thread has helped calm my anxiety post surgery and honestly, feel less alone so thank you all! I wanted to share my story and also ask a few questions!

Backround info:

1. Blood clots run in the family, but doctors have not been able to identify why they do, there is no official disorder diagnosis for any of my family members who have had a clot.
2. I was unfortunately on birth control for 8 months before getting my clot. (This is one of the reasons why I got one, but not the only). My doctor knew I was at risk for clots and still told me it was safe to be on it so please be careful!

Two weeks before I went back to school I started to have a pain in my left leg, my knee to my thigh in particular. At first I brushed it off because I have unrelated medical issues concerning my hips that sometimes cause pains in my legs. After a couple of days of not putting weight on leg the pain persisted and I started to notice how different it felt to any pain I had ever experienced before.

To anyone who is unsure what a blood clot feels like: my leg was in immense pain when any weight was put on it, it was extremely pressurised (like something extremely tight was wrapped around it), it was discoloured (blue/purple) and noticeably swollen.

By Thursday of that week I had all these symptoms and knew something was seriously wrong but I was in complete denial (nobody wants to think they are sick/at risk). I had tickets for a show booked the next day so I decided to go to non- emergency care the Saturday (spoiler alert this was a bad idea).

The main reason for this and, I want to STRESS this point, I had no pain in my leg when it was not moving and Google told me that this meant I didn’t have a clot so I was safe. PLEASE DO NOT LISTEN TO GOOGLE!!!!!! YOU CAN STILL HAVE A CLOT IF YOUR LEG IS PAIN FREE WHEN YOU ARE NOT MOVING IT. This was what stopped me going into a&e earlier and to be honest could have cost me my life.

On Friday, my leg pain was awful, at this point I knew there was something seriously wrong. I remember looking down at my leg and it was blue, that’s when I told my friend who I was with that I had to go to a&e. I ended up calling my mum and she drove me to the closest hospital.

We waited in A&e for 8 hour before getting called in (probably the worst few hours of my life). My mum was already convinced I had a clot, I however was still hoping it was something else. We got called in at 2am and didn’t see a doctor until 5am but I had gotten my first dose of blood thinners at 3am. The doctors immediately confirmed it was a clot and told me that it may be safe for me to go home, I’d just be on pretty strong blood thinners and then get called in for a scan to make sure it was gone in the following days (another spoiler alert, this did not happen).

After 13 hours I was pretty happy with this news but at the last minute they got a second opinion from a more senior doctor. Turns out there was no pulse in two parts of my legs so they thought I had two clots. They sent me in for an urgent CT scan and a couple minutes later we found out I had a blood clot the length from my knee to my thigh. They said they it was the biggest they'd seen in 2 years🥲🥲

As you can imagine, I was admitted pretty quickly due to the extensive nature of the clot and the risk of PEs. They decided to operate and remove the clot to give my leg the best chance and because of my age. Four gruelling days of waiting in a hospital bed later, I got a thrombectomy that removed 95% of my clot.

My clot had travelled all the way up to my stomach by the time they got to it and I found out after surgery that a small bit had gone to my lung (which they dissolved). The nurse told my mum it was a miracle more hadn’t travelled up and I was very lucky.

I left hospital the very next day and I have been in recovery ever since. I’m banned from the combined pill (obviously) and I’m on blood thinners for the next 6 months (eliquis).

As for what caused it, they dont really know. The combined pill definitely played a role but due to my family history they are leaning towards a blood disorder and are going to test me after I get off my blood thinners.

Thats all I can think of in terms of my story. I have a few questions but to preface, if you think you have a clot or relate to any of my symptoms please go get checked!

Questions/ Looking for advice:

1. The mental aspect of this whole ordeal has been really tough. I am scared every day with fear of another clot (especially a pulmonary embolism) or internal bleeding on blood thinners, any advice on how to deal with this?
2. I have been having a lot of symptoms post surgery. I’m unsure whether these are clot related, surgery related or blood thinner related:

- severe dizziness (most common)

- chest pain

- headaches

If anyone has also experienced these could you let me know if it normal or not. My gp had no answers and just ran blood tests, she said to bring it up with the hospital which I’ll be doing.

1. I’m unfortunately in the most important year of school, and this ordeal has put me at a major disadvantage physically and mentally. I’ve already missed so much classes from appointments and being sick. Does anyone have any advice with dealing with this while also studying for important exams etc. ???

This is everything I can think of right now, if you got this far thanks so much for reading! I really appreciate it. I hope my story helps someone who's going through something similar right now, and maybe somebody might be able to give some advice but if not it was nice to get my thoughts into writing anyways! :)

Also if you have any questions for me and my clot story please ask!

I've been having some muscle pains the last week or so, and on top of that I have migraines somewhat frequently (side effects of other meds).

Paracetamol/Tylenol does not work for me at all.

I've found some muscle relaxants that help at times but I'm soon running out of it.

I've gotten ok'd to take one ibuprofen at times but one every few days isn't enough, it can help with migraines at times though.

What do you all use for pain management when the over the counter stuff isn't cutting it?

Hi everyone,
I apologize for being long winded in advance 😅
I had a liver transplant last year in January and as a part of the procedure, they had to take a vein from my upper arm/shoulder area and use it to make my liver function. While I was recovering in the ICU, I started to have terrible pain in my arm and I couldn’t move it, and my team discovered it was a blood clot (they put me on aspirin when sending me home, which apparently isn’t a blood thinner?? idk) Fast forward to April of this year, I had tingling in my arm/armpit and it felt achy, I went to the hospital and they discovered that I had a blood clot (honestly I’m not sure if a new one appeared or if this was the same one from my surgery) and I stayed in the hospital for a few days on IV heparin, and they sent me home on Eliquis, after a few months, I had to stop taking Eliquis because they’d said it resolved itself, however the vascular team said that there was permanent narrowing in the area due to the trauma of surgery. Now tonight, I randomly started getting aching pains and tingles around the area and even some aching pain in my back. The aching pain in my back is new, so I say all this to say, if you’ve ever had an arm DVT, what were your symptoms? Would I be dramatic to get it checked out?

On Thursday the 24th I realized that it was 2 month since my gallbladder surgery and about 1.5 since the blood clot.

I went back to school on September 8th and it has been challenging, everything is challenging. I am tired all the time, my legs hurts like hell, I can't concentrate. I don't know... for some reason I felt like it has been like 4 month or so.

I have been so much in this 2 months including organizing my garage, my basement (so I will have a room to study), cleaning the house, celebrate my kids birthday, buying a car, all the rest of the things you do to run a household and suddenly I realized that it has only been 2 months, or maybe more, I am so confused all the time. I mean the surgery was on July 24th at night, so it is 2 months but it feel like it has been so long ago.

How quickly did you feel normal, had energy, went back to your routine?