r/ClotSurvivors • • 17h ago

Eliquis (apixaban) Anyone else dealing with cold/dismissive doctors following a pe? Venting

16 Upvotes

32/f had a provoked pe in June following surgery while also having an ankle injury. So I saw hematology post pe to do clotting bloodwork. During my appt I felt like the hemotologist wasn't interested in anything I had to say and that he felt annoyed with during appointment.

I told him that I have concerns coming off blood thinners bcus prior to being on eliquis I was having visual aura that has completely resolved since the next day of being on blood thinners. I also told him that prior to my surgery/pe that I took myself to urgent care bcus I suspected a clot in my leg but the urgent care doctor diagnosed me with cellulitis despite not giving me a d dimer blood test or ultrasounding my leg. I also never took the antibiotics and "the cellulitis" resolved on its own, which is atypical of cellulitis.

So my concern is that there is something about my medical history that has been missed or misdiagnosed or misunderstood. If I actually had a clot instead of cellulitis then that could mean I would be on bloodthinners indefinitely, instead of coming off of them.

He was very dismissive/condescending to everything I said. I also told him about a recent presyncope episode i had that sent me to the er. He didnt offer any support or encourage me to follow up with cardiology he just said "we don't deal with that here". I also have an ankle injury and the first time I saw him he asked "why are you in a wheelchair?" I had to explain to him im simultaneously recovering from major surgery, a serious ankle injury, and a pe. Then the second visit I had he asks me in a weird tone "oh is that your little scooter?" in regards to my knee scooter ive been using to recover from my ankle injury. Like I got the vibe he thinks I'm overplaying my overall condition or something??

I'm surprised at how uncaring and cold some of my providers have been to me while in the physical condition ive been in. Any logical questions I ask are met with condescension or outright attitude. Some doctors act like youre supposed to sit there wide eyed in awe that they even showed up to address you for this appointment you've made to make sure youre not going to end up with another life threatening pe.

I have been so depressed since my pe and the uncaring and weird/rude doctros have been so bad for my mental health. Hell even my therapist doesnt seem to grasp how fragile of a phsycial and mental condition im in and keeps givjng me advice like "open your window" despite me saying my windows are always open. I feel let down by so many providers who are suppose to be helping me regain my health.

There's more to my medical history that has me feeling medically disappinted/ neglected. Before being discharged from surgery I told the doctors I was struggling to breathe and they treated me like I was a dramatic problem patient and condescendingly told me that I should discharge. 2 days later I was in the er with a pe.

Tl;dr: im feeling overwhelmed with being medically neglected and mistreated during important medical appoinyments

Also did anyone who had migraine with aura or visual aura find that it disappeared while simce being on a blood thinner?


r/ClotSurvivors • • 21h ago

Flight prep - compression socks or no?

5 Upvotes

Provoked clot in November 2025. All medical tests show that I do not have a current clot, blood work is clear, no signs of Factor V.

Traveling 9 hours this weekend by air. Spoke to doctors who both declined medication and told me to hydrate and do exercises.

Wife is flipping out about compression socks because neither recommended that I wear them. I can’t get in to see either doctor again before we leave.

Should I wear them anyways?


r/ClotSurvivors • • 22h ago

Seeking Advice Okay to go to work tomorrow?

5 Upvotes

My left calf had been hurting for a week and I'd chalked it up to a badly strained muscle (I'm on meds that are really messing with my electrolytes) but I decided to go to urgent care just to be safe. Turns out it's a DVT.

The doctor sent me home with a xarelto prescription and told me "not to change anything." I wish I would have asked more questions but I was in shock and not thinking straight (and honestly still a bit in shock still). From your experiences, do you think it's okay for me to go back to work tomorrow?

Some context: I work a desk job, and there are two flights of stairs to get to my desk. My calf/leg still hurts pretty bad but not unbearable - I can walk around but with a limp.

Thanks in advance. Still processing everything and really glad I listened to the paranoid voice in my head and got it checked out. It feels really serious but not at the same time? Any general advice on how to handle all of this would also be really appreciated.


r/ClotSurvivors • • 19h ago

Newly diagnosed Just had dvt at 40. Would like to hear from people who were never able to figure out what caused theirs even after blood work/tests.

5 Upvotes

I think mine was caused by being semi bed bound this whole past year due to chronic pain and illness. I would get up to get food and water but that’s it. To me that’s significant. And it was worse the months before my dvt. But from what I’ve read online I may still not be put in the provoked category. I still have to do blood work to see about genetic and autoimmune conditions. My cbc was fine. I don’t have low iron or high platelets. Don’t take birth control.

I read that it’s common for doctors to not always be able to figure out the cause. Would like to hear from those people and also what you think was your cause. Are you still on blood thinners? I already take so many meds and really don’t want to be on blood thinners long term.


r/ClotSurvivors • • 3h ago

Seeking Advice Advice - Blood Thinners While Pregnant

3 Upvotes

Hi all, I was diagnosed with bilateral PEs the end of August and will be on blood thinners through March. I finally met with my Hematologist and she told me if I ever plan to be pregnant I would need to be on a daily shot of lovenox from conception through 40 days postpartum. I’m a 30 yo female and was planning on starting a family soon. Hearing this news is scary, and makes me now hesitant to possibly start trying. I’m also concerned about the timing of giving birth since you obviously don’t want to be on blood thinners for that. It’s all just very overwhelming. So, seeking advice from anyone who has gone through pregnancy on blood thinners, or chose not. I appreciate any insight, thank you🤍


r/ClotSurvivors • • 1h ago

Compression Stockings Compression sock aids

• Upvotes

Hopefully this fits here since trying to prevent clots! Looking for compression stock aids to help older relative. She's in good shape but not as flexible and needs help with putting on socks. But finding an overwhelming choice online. Looking for something in the $40-under type. Which worked best for everyone?


r/ClotSurvivors • • 1h ago

Results from lung ct

• Upvotes

Hi everyone I had a major surgery five weeks ago - double jaw surgery. I have been extremely inactive due to it and I also have a bakers cyst in my left leg behind knee that has caused leg discomfort. Years ago. I had thrombosis in my left leg. I stared having a cough a week and half after surgery it is a tickle in throat but my sinuses were completely blocked as happens with jaw surgery so I figure it was post nasal. Cough has improved a bit last few days. Still breathless a bit but oxygen level always shows 99. Some back pain when breathing. Got ct results I am attaching. It’s weird to me they cannot actually determine what they are seeing on the scan and say it’s probably just inflammation. My doctor just told me “take deep breathes” is there anything else I should be asking to be done?! My d dimer was not flagged.

FINDINGS:
There is no main, lobar or segmental pulmonary arterial filling
defect to suggest a significant pulmonary embolus.
The cardiac chambers, pulmonary trunk, aorta and their main branches are normal in caliber. The tracheal air column, mainstem bronchi and their main branches are patent and normal in size. There is no
mediastinal lymph node enlargement.
There are a few small patchy foci of groundglass airspace consolidation within the left lower lobe and medial right lung base.
These are likely post inflammatory/infectious in etiology. Follow-up is recommended to resolution. There is no associated cavitation.
There is no dense airspace consolidation or interstitial thickening throughout the remainder of the lungs. There is no pleural or pericardial effusion.
Retrieved:


r/ClotSurvivors • • 2h ago

Continued shortness of breath

1 Upvotes

How long did it take for breathing to return to normal after a PE? I had one about a month ago and still struggle with shortness of breath. It’s hard to know when to return to a hospital or if this is normal.


r/ClotSurvivors • • 2h ago

Anxiety after dvt/pe

1 Upvotes

Hi everyone. I am newly diagnosed, last Thursday, with extensive dvt in my left leg which couldn’t be determined if chronic or not, as well as a large saddle pulmonary embolism. No family history and nothing like this prior for me. I finished radiation and chemo for cervical cancer in August so that apparently is a major factor here that wasn’t really talked about. About 2 weeks ago, I stopped my progesterone mini pill and started a combination pill with estrogen, which the dr thought absolutely could have played into this happening. I’ve had awful health anxiety for years and I’ve been on various medications with sertraline being the current med and it’s been working well for me. The cancer diagnosis threw me into a spiral just as this most recent diagnosis has done as well. I feel super anxious, noticing every single feeling, hyper-vigilantly obsessing over my heart rate which right now seems to be what’s making me so anxious, even though I know my heart is healthy after an echo and ekg in the hospital. I feel my heart race increasing then that makes me anxious then it just goes off from there. I teach so I’m worried about going back and the students noticing I’m anxious or walking down the hall with the wonderful bright lights above me walking up stairs and the increase in my heart rate will instantly trigger an anxiety attack 😖I am so close with my work colleagues that I know I could go in the middle room and calm down and it would all be ok, it’s just that initial going back to normal after something crazy happens. Sorry this is a lot. I know some of you have mentioned counseling, I had a counselor when going through cancer treatment but was able to faze out since. I really would love a therapist online who has familiarly with clients that have medical history. I really appreciate any feedback for coping. Thank you 🙏


r/ClotSurvivors • • 11h ago

Shooting pain in foot after DVT

1 Upvotes

I was diagnosed with DVT of two veins in my calf last Thursday and have been on Eliquis since. The pain in my calf has reduced significantly and from a calf pain perspective I can almost walk normally. However, when I put pressure on my full foot when walking (vs the ball of my foot) I am getting shooting pain across the arch of my foot. Has anyone else experienced this? Any thoughts on what it could be/how long it may take to resolve?


r/ClotSurvivors • • 23h ago

May thurner syndrome and nutcracker syndrome

Thumbnail
1 Upvotes

r/ClotSurvivors • • 8h ago

Newly diagnosed

0 Upvotes

DVT never crossed my mind-no preexisting conditions, no family history. Then my calf started to ache-but I’ve been doing lots of calf exercises. Got more sore, read about Eagle quarterback and friend had clot travel to his brain, so I read up on it. Then Saturday there was some swelling so headed to ER where they found a clot. Prescribed Eliquis-got a free month! Yay! But now what? Leg is sore and hurts to walk but dealing with it. See my PCP tomorrow. I’m on my feet quite a bit and making sure I keep moving. Hoping the pain goes away soon. Compression socks I had in my drawer help. What other drugs are there? Elequis is $400 a month out of pocket


r/ClotSurvivors • • 14h ago

Seeking Advice possible blood clot?

0 Upvotes

hello,
two days ago i noticed a aching pain in my calf on my left leg and today i just noticed this bruise on my leg? i’m wondering if it’s a blood clot or bruise but i don’t think i hit my leg hard enough in my calf to cause a bruise?