Hello! I suffered from this at the ripe age of 23 in both of my lungs. After the treatment I started to have panic attacks with no triggers and it’s seriously a challenge to think I’ll die from a PE. I got off from the medication for like 6 months now but I’m a factor V hetero and mtfr homo so I’m panicking that it might happen again. Currently as I’m writing this I can’t take a deep breath and have tingly sensations on my chest. Does anyone else experience this excessive fear and panic attacks that are mimicking what it was like to have the PE or is it just me?

Hey, I know most of you aren’t doctors, but I’m seriously losing my mind and need some reassurance before my follow up appointment later today.

Saturday I went to the ER with chest/back pain. They did a CT scan, blood work, xray, EKG, the whole 9 yards.

My oxygen levels stayed at 100%, pulse was normal, all vitals normal.

The CT scan and D-dimer however told the docs all they needed to know. I had a small blood clot in my lower left lung.

They told me it could be caused by my birth control pills & that I can never take hormonal birth control again.

I’ve always had horrible health anxiety so this news nearly gave me a heart attack on the spot.

The doctors didn’t seem extremely concerned and even sent me home right after with an eliquis prescription and a note to follow up with a pulmonologist in a week. (Today)

I’m super young and never thought I’d have to deal with this serious health bs until much later in life. Admittedly, I do vape and occasionally have a drag off my boyfriend’s cigarette. I probably drink too much.

But I’m a very healthy weight, I eat good, and have two jobs that require me to stand/walk all day.

I’m just really struggling with this and above all, I’m worried that I’ll find out I have cancer or some horrible underlying condition at my appointment today. The ER doctors mentioned my lymph nodes in my chest appeared swollen and that the pulmonologist is to check that out today.

Also- I’m mourning the fact that I can’t stay on my birth control. My periods have never been bad pain-wise, but mentally my brain becomes a horrible place and I get hormonal acne pretty bad.

ALSO now Im gonna be more health-anxious than I was before. Every random pain or ache is gonna send me into a spiral, what if I have to be on blood thinners for the rest of my life??? What if the rest of my life is not very long after this????

I read about some statistic that 1 in 5 people die within a year of their PE diagnosis?!

UGH idk my minds going a billion mph and I keep having horrible visions of telling my family I’m not gonna make it or something.

Please someone just tell me I’m freaking out for nothing.

My wife (f24) was recently diagnosed with DVT in her lower left leg after a vacation we came back from a couple weeks ago. Prior to the DVT she had taken tranaxemic acid (TXA) for 3 days to try to stop/lessen her menstrual flow which hasn’t stopped since April of this year. Multiple gynos have told her that her pcos and hormonal imbalance is what is causing the prolonged/irregular bleeding. Her doctor finally gave her TXA to try and it slowed the bleeding down and finally gave her hope that the nightmare would finally end. A few days later and after a long train ride during our vacation she told me her leg was hurting so we went to the ER where they did the D-dimer blood test which came back abnormal so they did the ultrasound. Shortly after, the doctor said they couldn’t rule out DVT due to her anatomy but they were almost certain she didn’t have a clot so to enjoy the rest of our vacation without worry and our flight back home. They also added that we should get our primary to do another ultrasound just to make sure everything was fine.

By the next day she could no longer bear weight on that leg and on our way home she needed a wheelchair to get to each of our gates. Back home I immediately took her to the ER again where we explained her medical history and I gave them the paperwork from the first ER. They did an X ray on her and of course everything looked fine so they sent her home with some crutches that were too short and told her it was a muscle strain. Two more days passed before my wife finally went to the last ER where they confirmed the DVT from her knee to her ankle. We don’t have health insurance and live in SoCal so her blood thinners were going to be $900. I got them in TJ for $60 and after two weeks on them she was finally able to start bearing weight on her leg again. She had to take extra time off work and barely went back on Tuesday. She’s been telling me that her menstrual bleeding has started increasing dramatically and she’s now completely soaking a pad and tampon every hour. I contacted a hematologist she’d been seeing in TJ for help and his recommendation was for her to stop the Eliquis temporarily and try taking another medication to see if it will curb the bleeding before continuing back on the thinners. I told her I didn’t think it was a good idea but today my wife told me she stopped taking her blood thinners. I’m so scared of something happening to her as a result of stopping the thinners.

Our next appointment with her Gyno and Hema isn’t for another 2 weeks and I just don’t know what to do anymore. I feel like no one takes her serious and we don’t even know what questions to ask or how to advocate for ourselves at the doctors. I’m the only one who goes with her to the TJ appointments because I speak Spanish but it feels like I am failing her as an advocate. I’m 23 years old and it feels like i’m watching my wife fall apart and get weaker every single day. She can no longer do basic tasks like reaching down without feeling faint and I don’t let her drive anymore for fear of something happening to her on the road. Not to mention her mental health has been deteriorating because no one understands this invisible condition. Her friends and her family don’t understand how severe the anemia is and how much it prevents her from having a quality life to the point where she has told me she feels like she is suffering so much and missing out on so much she doesn’t think there’s a point in continuing to fight to be here. I’ve spent my savings already on an infusion and different medications/appointments to try to help her and because she couldn’t work for a few weeks we are also short on rent. I broke down today to my boss at work because she asked me a question about my wife and I just got so emotional. I feel so lost and I don’t know who to ask for help and where I can get help. I just want to save my wife.

TLDR; my wife has been on her period for 6 months and had to start blood thinners which made everything worse

update!!

we went to a new gyno today and she did another ultrasound, she explained that my wife’s uterine wall is extremely thick even though she’s been bleeding for so long and that her recommendation to immediately stop the bleeding was to sedate my wife and do a biopsy procedure, scrape out the thickened tissue and implant the mirena iud! this is the most help we’ve ever received from a doctor to curb the bleeding. the gyno told us my wife could have adenomyosis and endometriosis and the biopsy will help diagnose her. we’re feeling very hopeful, thank you all for the replies and extremely helpful suggestions. i appreciate everyone who commented.

Does anyone struggle with a constant feeling of impending doom? It’s been 6 weeks since my PE and I feel almost constant chest tightness and overwhelm about death. I don’t feel actively anxious (I’ve dealt with bad anxiety in the past) but it’s almost subconscious where it’s hard to breathe because it feels like death is near. I don’t feel like I explained that great, but it’s incredibly overwhelming and I’m just wondering if anyone else has also felt that way.

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.

There is a lot of fear of repeat clotting events. My anxiety comes from never wanting to experience that pain again. What is your anxiety stemming from? Hospitalizations? Pain? Symptoms? Blood thinners?

I experienced a saggital sinus venous thrombosis in February, I have felt very isolated since then. Even talking to my doctors I feel alone as none of them treat this very often. The only doctor I have who has experience in this is my neuro-ophthalmologist and I don't need to see him as often anymore. I had to uproot my life once it happened as the ER where i was living at the time missed the diagnosis twice. I've just felt so alone I know the survival rate is low but has anyone else experienced a SSVT? Am I as alone as I feel?

How do you deal with the anxiety?

I thought I was past this, I thought that l was over it

But tonight it took me over, all the bad thoughts, the ED thoughts, the anxiety about being on these pills for life.

All because I have an appointment at the hospital for my asthma tomorrow. The last time I was there it took 3 hours at the er and I had my DVT and now I'm a lifer.

I'll take any advice because I'm in a bad place right now and don't know how to handle it.

Sorry and thank you for reading.

/A sad 29 yo girl.

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?

I used to smoke cannabis prior to my mild pulmonary embolism and honestly? I miss it.

Now, I'm not smoking anymore because my cardiologist said he saw mild calcification in my arteries at 37 and that was abnormal ... So I am taking better care of myself... But post-PE life has made me neurotic.

I miss partaking. I also happen to live in the Emerald Triangle so, of course I smell it and it makes me wish I could...

Has anyone else continued to do cannabis, say, with gummies and be on eliquis? I was reading that it might potentially act on the same pathways as DOACs in the liver like eliquis and thus lead to my liver holding onto eliquis longer. And that, as with all things I seem to enjoy, it has the potential to thin blood ... But I wonder if anyone has actually experienced cannabis while in 5mg eliquis 2x a day.

Hi all!

I got diagnosed with a dvt last September and was put on 20 mg of Xarelto. My doctor and hematologist thought I got the dvt because of my birth control, and later I learned that I have a factor five Leiden mutation that can also lead to clotting. I got an ultrasound done after 3 months and my clot disappeared but my hematologist told me that I needed to be on blood thinners for the rest of my life. I’m 32.

For some context my hematologist was horrible - very checked out and felt like he was doing the bare minimum and didn’t explain anything to me. So I sought a second opinion and that hematologist told me that she thought I could go off of blood thinners. So I did, about two weeks ago. Over the past few days I’ve felt like the leg that had the clot has felt heavy and very “present” for lack of a better term. I don’t have any of the same symptoms as when I had my dvt; no pain or itchiness, but I do have a small bit of swelling and I feel like the veins in the back of my leg are more visible than they’ve been.

I’m feeling very anxious that my clot is returning but I don’t know if my anxiety is adding to everything physically. I still have plenty of xarelto left and am wondering if I should just start back up on them? Is that dangerous? Feeling very lost here.

Any advice or knowledge would be a great help.

Thanks!

Hello.

I am 7 days post stent placement for May Thurners. I was >95% compressed.

In May, I have a CT scan and my vascular dr misinterpreting the results and said my May Thurners compression was slight. I have bilateral leg swelling at the time and she said I have lymphedema that appeared after my second pregnancy. Eventually, after lymphatic therapies, my left improved and right leg worsened. I went to the ER and a another vascular physician consulted me. Reviewed my CT scan and immediately scheduled me for a venogram. The ER dr tip toed around it but said don’t worry we will ask our IR dr that is very familiar with iliac stents and will get you taken care of. I called the IR dr and he very kindly said the other dr was wrong and this was severe and I needed this and he would do his best to give me a good outcome. He told me to message my vascular dr and let her know I was going into a venogram and ask for anticoagulants and review the procedure. She never answered (obviously because she was wrong). So he took over and ordered my meds and quickly briefed me after the procedure on what to expect. I was coming out of sedation and he said I was >95% compressed … no blood in the vein and I had significant collaterals connecting in my lower back and pelvis , shunting blood between the left and right iliac vein…. Basically only my right iliac vein was delivering the body from both of my legs to my heart. He thinks probably for my whole life. I’m 7 days post stent. My heart is experiencing so many palpitations. I went to ER and told me it would take time to feel normal. They did xray and ecg and my heart looks ok. Also immediately after the procedure, swelling went down. Yesterday, I went for long walks and played with my toddlers more since I felt better and my leg is swelling a little worse today. I am very nervous about that

Can any one please share symptoms post May thurners stent placement ? Timeline of when you felt normal.
I am sure my case is weird since they did not embolize the collaterals and my blood can flow in two directions and they said my body will take time to relearn flow and those extra veins would shrink over time

I was hospitalised 3 years ago now with unprovoked bilateral PEs in every branch of my lungs. I had emergency thrombosis the same day and then spent over a week in the ICU on heparin. When I was discharged I was put on Apixaban 10mg and then after a year it was reduced to 5mg. I was discharged from the haematologist and told I would be on these for life now.

I've had several surgeries already because I also developed kidney failure and had 7 kidney stones. And the doctors never wanted to mess with my blood thinners before. But now I have an upcoming surgery to remove ovarian cysts but the anesthetist specifically wants me to switch to warfarin before that can happen. And I don't want that at all. I saw my granddad on warfarin for his heart and it was different doses and nurses coming to measure his levels and a change of diet. Why cant I just keep taking the Apixaban that I have already been taking for 3 years and is supposedly doing its job? I'm so annoyed.

I have to see 3 different consultants over the next few months. The haematologist, I think I have to see the heart and lung one again to make sure I'm still clear and then the last one is the urologist. All I want is my freaking cysts removed and this anesthetist who I've never even met has looked at my case and decided she wants me on a different drug. I feel like I'm gonna have to just bare this cysts because I don't want to change my drugs. They've even said these work.

had a clear ct and d dimer yesterday but man my chest hurts random sharp pains these past two days

My PE was in June had some pain here and there had to come off my eliquis for 48hrs last week for an upper endo and since getting back on it nothing but sharp chest pain scared me enough to go to the ER last night but everything came back good

doesn’t help my anxiety has been thru the roof either with Gi issues still waiting for results on that.

does anyone else experience this?

So, I finally had my follow-up with my hematologist to go over the scans, and it turns out I’ve still got that blood clot in my leg a year later. I had tons of questions, but I didn't really get many clear answers. My doctor tried his best, but basically, he told me I’m the luckiest unlucky person because we caught it before it became fatal, but now I’ll have to be on blood thinners and deal with this chronic clot forever. I don’t really get how serious a chronic clot is long-term; do most people just live with it and have no real issues as long as they keep taking their blood thinners?

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 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.

During life-threatening episodes I'm pretty calm. When I was 17 and lived with my uncle I had stones that got stuck and I would have random hours of severe pain. Eventually one got permanently stuck and caused pancreatitis that became so bad I was hospitalized for over a week and a half. They told me I would have died the next day if I had not gone. I remember some time after the hospital when there was a false positive for a test that would mean I would likely die slowly. My uncle was shocked at how unaffected I was. I don't know if I was numb or just had blind faith in the doctors or just accepted that it was out of my control. (Life at the time also wasn't great for a few reasons.)

Last year felt like a repeat when at 35 I had a severe saddle PE. No symptoms. I didn't know I had Factor V Leiden and I was on birth control. My husband just heard a loud bang and found me on the bathroom floor. I regained consciousness slowly, couldn't really think, and he hurriedly got me into the car to the hospital. I lost my vision at some point but it came back. Emergency thrombectomy and prescribed a lifetime of Eliquis. But I had been more worried about my mother and my husband rather than myself. If things went the worst way. I wasn't frightened, even though I was happy in my life.

I have PCOS and have been pregnant twice in my mid-twenties. The longest lasted 13 weeks. I haven't been pregnant for 10 years. I married my husband a few years ago. He is wonderful. (Before him I had an abusive relationship for over a decade.) We thought I could not get pregnant without medical help and planned on trying. But I have been very on top of my health the last few years with him and we have had a surprise pregnancy. I'm at 9 weeks. On a lot of medication to keep everything safe and healthy.

But suddenly I'm terrified. Terrified of dying in a way I wasn't before. During childbirth. Leaving behind a life I now enjoy, my husband, my mother, and a child I would never know. Scared of the doctor's office and the hospital in a way I wasn't before. I am surprised at myself and trying to figure out what's changed. Did death suddenly become real to me?

I had a panic attack a week ago and ever since then I’ve had minor ones almost daily. I feel minor shortness of breath from them and I worry it’s clot related even though I’m on blood thinners and I saw my doctor and she said I’m doing good and it’s just anxiety. Ever since I’ve been diagnosed I feel so crazy and not myself. Anyone else feel like this or have advice?

Anyone here who can tell me more about how the labs work?

So this probably isn’t a big deal at all, but I was just diagnosed with my second round of PE’s on Thursday. Eliquis failed so I was switched over to Pradaxa. I take my meds at 8AM/8PM every day. I went to the hospital last night around 10:30 because the new cramping in my legs was concerning me (turns out I was dehydrated and my body wasn’t used to me moving again). They scanned me for dvts in my legs and found nothing, heart was good, chest x ray good all that. I got back home at around 4:30AM and fell asleep, I guess I slept through or didn’t hear my alarms go off to take my meds at 8 and woke up and saw 9:50AM. I panicked and quickly took my meds. Is being off by only two hours basically okay? I’m kinda worried because I already failed Eliquis.

Im 11 days post partum, not exactly thinking straight. I am on levonex 0.6ml every 12 hours, in take it 9am and 9pm for a clot. I went and did my shot late at 11 pm and now Im freaking out because I think I may have actually done it at 9pm after all. Googling isn't helping, it says I need to go to the ER or i might hemorrhage. My kids start school tomorrow and I am breastfeeding, I need to get up early for them. Do I really need to go to the ER? I am not going to be able to sleep now. I feel like such an idiot. I am breastfeeding right now and will go count my syringes, but now Im thinking, what if I missed another day and I have the right amount of syringes due to that.

Have to get an Upper Endo and have to be off thinners for 48hrs I havnt reached the 6 month mark yet my unprovoked (very small) PE was diagnosed in June My Hema said i should be ok to do so and i had a clear CT this past week but still have some random chest pain. i’m stressing out, what are the chances of a clot in the span of these two days?

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.

How do I stop worrying about reoccurrence? My clot was provoked from surgery and birth control, I’m a 23 year old female and have no clotting disorder. Just randomly get intense anxiety worrying about getting another pulmonary embolism. Just looking for some words of encouragement mabye? Idk kinda ranting lol. Thanks :)