r/ClotSurvivors

Hey guys!

Im nervous for my trip. I was diagnosed with SVT on my left ankle and ill be traveling to italy with 9hrs flight after my 25th day of been taking Elonox, enoxaparin as my blood thinner. I've researched a lot on Google with AI responds and stuff and the more you research the more scary things you'll see. I just want to know if there is anyone with this experience that has traveled to a 9hrs flight and how was it?

Please help!!!!!

Hi all - just would like help if anyone here has been refused an ultrasound?? I was diagnosed with superficial thrombophlebitis 5 weeks ago. Cramp in my calf, veins are sticking out and hot to touch and itchy! And my knee is swollen. Went back to the drs and … the GP asked if I had mental health problems? I’ve read the drs notes and its states I no longer have it..

yet I am in the exact same situation,The GP will not even refer me to the varicose vein team!

The last nurse I spoke to 3 days before the GP said I should have had a refer to the varicose team as well as an ultrasound..

I’m at a loss and just feel like crying, I feel dismissed.

Hi everyone. I guess I am just looking for any positivity or help to look at the plus side of things or not feel so anxious.

I’m on postpartum lovenox (I’m a month postpartum this Thursday).

I got started on lovenox at 19 weeks due to DVT in my leg.

I am feeling SO anxious about waiting for my period to return postpartum. I can’t shake this feeling of fear. All I see online are horror stories of a mixture of postpartum periods and periods in general while on blood thinners.

I have such a fear that something bad will happen or end up in the hospital due to the bleeding.

I definitely know I need some therapy to process all I’ve gone through this year.

Anyone have positive stories at all or any way they processed this? Anyone else felt the same and was okay?

I am just thinking the worst ugh.

I was diagnosed with two P.E.one in each lung. This was found when they did CT scan looking for internal bleeding due to going to e.r. for severe anemia. They could not find a bleed....anyone find after their clot they found cancer?

Long story short, I’m 24 weeks pregnant and have been on enoxaparin since 9 weeks for a PE. Shortly after starting it, I started getting debilitating migraines, 2 or 3 a week, lasting 24+ hours. I have always been prone to getting headaches and migraines but never anything of this frequency or magnitude. Ever. At this point, I have linked it to the enoxaparin. Eventually after getting desperate enough, I have come off of it on several occasions just to be able to take medication that will actually work and within 24 hours of restarting it, I have another one. It’s too much of a coincidence.

I have been in the ER 5 separate times this summer for this(including while out of town on vacation) and I am EXHAUSTED. I have had CTs, nerve blocks, all different variations of migraine cocktails, and I was told the next time I go in, I’ll have to be admitted for an MRI. They sent in a referral to neurology but neurology can’t see me until March. Multiple ER doctors have mentioned triptans but no one is willing to be the first to prescribe them since I’m pregnant. In talking to my MFM, she thinks I may be sensitive to an ingredient in the enoxaparin, and is recommending I try Fragmin instead, but I’m worried about my insurance not covering it since there is no generic.

Has anyone else gone through something similar? I feel absolutely crazy and haven’t been able to come across anyone else who has had a similar experience. All I know is that I am miserable and this has been the worst experience. This is my third baby, so I have 2 other kids who need me and I’m a student about to go back to school for the fall. I can’t keep going like this and this has ruined what could very well be my last pregnancy 😕

Two Fridays ago I almost died in a restaurant waiting for dinner with two of my children. They found a pulmonary embolism in my lung. They couldn't find out why. My kids are 21 and 19, they thought I was playing with them at first because Ive always been unbreakable. I've been wrestling with fear and weakness. They did every test and scan known to man. I'm 39 years old, with a healthy diet, and very active at the gym. I feel like I've been living in fear the past week, worrying about how soon I can go and how lucky I was that it wasn't August 7th. But how long do any of us really have and what can I do to get my beast back?

So I survived a PE plus left lung infarction back in February when I was 28. Still on blood thinners until December and I’ve got a VQ scan coming up soon.

I keep getting this weird feeling right in my upper chest around the pecs area. It doesn’t even really hurt it’s just this odd sensation or faint pain that comes out of nowhere. Happens at least a few times a week no matter if I’m walking sitting or lying down. Every time it happens my brain immediately jumps to oh no it’s happening again but it never turns into anything worse. Just this strange sensation that won’t go away.

From what I’ve read this is actually pretty common especially with the infarction. The scar tissue and the lining around the lung healing can pull and feel weird for months. Your muscles also get tense from breathing differently after everything. It’s reassuring that I’m still on blood thinners and the VQ scan will give me a proper clear picture of where everything is at.

I’m definitely keeping an eye out for anything that feels different though. If it gets worse or I get short of breath racing heart or anything new I’m going straight to hospital. But right now it feels like just part of healing even though it’s annoying and a bit scary every time.

Just wondering if anyone else who’s been through this especially with a lung infarction gets that same weird upper chest pec feeling? Would really love to hear I’m not the only one dealing with this. Still grateful to be here and taking it day by day.

I’m so over it. I got diagnosed with May Thurner almost 2 years ago and now I’m on Xarelto. I’m ALWAYS tired. And when I get my period it’s a literal blood bath. EVERYWHERE. I use the disposable panties now which kinda helps but holy moly it’s still bad. Highly embarrassing. I have to take 3 days off every month just to get through it because I end up with low iron, fatigued and have headaches. I can’t work full time because of this and even part time I’m on hella thin ice. I’m able to side hustle on my good days. My gyno is hesitant to do a hysterectomy just because of how high risk I am for blood loss or clots. Any advice? Thoughts?

Hey there, was wondering if others had experienced unprovoked arm DVT? Also any tips for pain relief? Pain meds don't seem to be cutting it, but only 1 week ago. Thanks!

I (F46) finishing my first week of blood thinners and I have a few questions that I hope someone has an experience with

1. For the love of the goddess, I can't remember taking medication on time. I take my thyroid meds in the morning when I get out of bed, it can be 6 am or 12 pm (if I am really lucky), this is why I moved to the Nova Ring (which I can't use now). The pharmacist told me that I have to take my blood thinners every 12 hours so I am trying to aim to 9am-9pm but here now its 10:30 pm and only now I took it. I have a reminder in my phone but...

How important it is to take the meds on time?

2. Has any of you did ear piercing on blood thinners? I want to do one in the upper part of the ear.

3. How bad is it to push yourself to work hard? I just carried about 100-150lb of soil. I just can't feel like a disabled person anymore (I also post GB op). I do feel tired and a bit of pain in my neck but I am okay otherwise

4. Compression socks -my legs look so, so, so bad. I have no way to start describing how they look but its bad. For how long should I wear the socks and is a time limit for wearing them in a day?

5. Biphentin - for ADHD. My family doctor said that its okay to start taking it, one of the walk-in doctor that I once met said that he is not a fan of adult taking them because it can cause blood vessels to constrict (narrow), which affects circulation in the small blood vessels of the fingers and toes. It is really helpful, but I don't know if I should take it or not...

6. Besides the stroke known symptoms, are there any symptoms that I should be aware of?

Thank you all ❤️

I had a DVT in my left arm/clavicle area which then went into my right lung. All resolved now. On eliquis daily. Just found out I am pregnant. Any tips? Success stories are more than welcome 🫶🏼

Hi!

I was seen today for potential DVT and now I’m health anxiety spiraling.

My doctor ordered all the labs and an xray stat, so I already (thankfully) have my test results back. Everything was normal except my d-dimer was elevated at 739. Naturally, I googled that and now I’m worried I have DVT and it’s going to turn into a PE. I’ve had a low level calf pain for the last 2 weeks, feels like a very light cramp that won’t go away. No swelling, no discoloration, no hot to the touch skin. Just a persistent annoying pain.

My main symptoms that I was seen for were feeling lightheaded and easily tired after minimal exercise..and I randomly threw the fact I’ve had this pain now for a couple weeks which set off some alarm bells. So here I am.

Now I have to wait for feedback from my doctor on my labs and see what next steps are. Would appreciate any stories of reassurance from anyone that has been through this before as it’s a bit scary.

I finally got the all clear to stop taking my eliquis about 4 weeks ago, 3 months after my initial diagnosis. I was wondering if anyone else has experienced shortness of breath this far out from clotting. My blood oxygen levels always come back fine (I keep a pulse oximeter on hand for peace of mind), so it mostly feels like impaired lung capacity? It feels hard at times to take deep breaths and i frequently feel the need to do so. I’m trying to get more physically active again but its difficult with my joint issues. It also feels worse when I’m laying on my back and today I have a pretty bad headache and some back pain (??). I’m planning on getting appointments with specialists, but the wait times around where I live are pretty rough. I also get occasional twinges in my chest from time to time and it spikes my anxiety really bad. I was just wondering if anyone had similar experiences.

Hi everyone! i(f30) went to urgent care last night for a kidney infection. I was in some pain and the ER doc ordered toradol. i told him i can’t have that due to blood thinker and he said 1 dose won’t hurt me. this is the first an er doc has ever told me this. all other doctors tell me absolutely no. i did skip last nights eliquis dose because i didn’t have it with me while at urgent care but has anyone been told its fine or taken it with eliquis?

Hey everyone,
I’m a DVT patient and work as a software engineer. I’m also on Xarelto (rivaroxaban) long-term, so I ended up making a really simple app for myself to keep track of my medication and make sure I don’t forget a dose.
Right now, it’s just something I use locally, but I’ve been wondering whether it would actually be useful to other people dealing with DVT, PE, or long-term anticoagulant treatment.
I’ve seen quite a few apps focused on things like GLP-1 medication tracking, so I was curious if there’s a similar need for anticoagulants.
If I were to turn it into a proper app and publish it on iOS and Android, I was thinking about features like:
Medication/dose tracking
Push notifications for doses
A history of missed/taken doses
Tracking different anticoagulants
Doctor appointment/medication reminders
Travel-related reminders
A place to keep important medication information
General DVT-friendly activity/exercises and reminders
Possibly nutrition/hydration tracking
I’m not trying to replace medical advice or create something that tells people how to manage their treatment. The idea would mainly be to make the everyday tracking side of living with DVT/anticoagulants easier.
And honestly, if I build it, I’d probably keep it inexpensive (maybe around $5/month or less). As a patient myself, I’d rather make something useful for the community than turn it into another expensive health app. 😂
So I wanted to ask people who actually live with this:
Would you use something like this? And what feature would make you think, “Yeah, I actually need this”? I’m happy to hear recommendations from the community
I’d genuinely appreciate ideas, even if you think the whole idea is unnecessary. I’m trying to figure out whether there’s a real problem here before spending time building it.

1. In the right lung base on image # 43 series # 250 is a noncalcified soft tissue nodular density 12 x 9 mm. A 4 mm nodular density is present just inferior to this on image # 45 series # 250. According to the Fleischner Society Foundation (2017), if a pulmonary nodule is greater than 8 mm, consider CT at 3 months, PET/CT, or tissue sampling.

This is what my follow-up, 3-month CT scan said. I had a PE and lung infarct this past May. I don’t see the doctor until next week, and I’m terrified. Is this nodule potentially just the infarct healing? Could it be cancer? (That would be very fast growing).

I know this is not a place for medical advice, but any reassurance or similar experiences would really help right now. Thank you so much.

i’m 18f (no big risk factors) and i’ve been to the er 3 times now for shortness of breath, chest soreness (the soreness has gotten better), cough, and most recently calf pain. i first went 2 weeks ago and they did an ekg and told me it was anxiety. my symptoms got worse so i went to a different er and they did a full blood panel and chest x ray and nothing. when the calf pain started i got a d dimer outpatient (normal) but it got worse so my dad called his friend who called in the d dimer for me and he said he’d probably go just to be sure, so i went back to the er and they did a leg ultrasound and then discharged me saying i either have allergies or anxiety.

every time i’ve been to the er before they even get my results/ultrasound back they‘re already telling me they doubt i have a blood clot, which really makes me feel like i’m already not being taken seriously. i haven’t been super athletic for the last couple years and have had a pretty sedentary lifestyle, but i’m very skinny (17 bmi) which also makes me feel like i appear “healthier” to doctors off the bat.

i’ve been to my pcp twice and she seems completely unbothered and didn’t even want to consider that i had bronchitis or anything, just said i had anxiety. i understand why they don’t want to do a ct (i’m also terrified of the contrast since my dad had a horrible reaction to it and it was scary) but i don’t know what to do from here since it’s been over 2 weeks now, hasn’t gotten better, and i’m getting scared

Hey all,

I need help figuring if this is calf dvt?

1 week ago I was on a lime bike and fell on concrete. My knee was bruised and leg cramped and I limped home. I went urgent care and they did some exercises and told me my leg is fine no need for xray.

2 days later am able to walk 10k steps but my leg absolutely refuses to run, my calf is locked up the minute I try to jog.

Yesterday during sleep, I feel pin point needle pain in center of calf. This pain comes when I am resting, if I am moving no pain.

I dont know why it felt like something is stuck and causing my calf to be super tender and locked.

I also dont know why my mind suspected clot, except the pain is really intense while resting.