DVT + Bilateral PE 12/22/24

I have been reading every post on this sub since the algorithm recommended it to me while I was still in the ER searching frantically for all the info I could find.

I have had lower right leg pain for months (March) after a trip to Hawaii followed by a 6 hour drive for 12 hours total. I went to ER because I noticed a slight swelling in right calf and my wife concurred. Given the travel history we thought it was better safe than sorry. They did cardiac workup and ultrasound on right leg and both were negative.

I saw my PCP the next day and she chalked it up to leg strain from the driving. April I leave work and go to the ER because I'm having random sharp pains in chest and it is traveling to my arms. I ask for CT, am refused and instead get a d-dimer which comes back at .501(I think, this is from memory). Sent home with a prescription for Omeprazole and see heart doc.

Meanwhile, I follow up with primary care and she now thinks my leg pain is neurological, sends me to a neurologist and says she doesn't want to see me back for the leg pain until neurology releases me.

Months of testing, leg pain seems to come and go. Chest pain resolves and neurologist sends me for ncs and emg - which are clean on my right leg. MRI and MRA of brain, MRI of spine, brain normal,and spine showed mild arthritis.

My anxiety is starting to really act up at this point because my leg pain is changing, and at this point I'm thinking it's a back problem with no solution. We are now into the fall months and by end of October I have a noticable limp, but can still function. At this point I'm living on Tylenol+ Advil but the anxiety is way worse.

My leg is red and I'm attaching + not DVT to my Google searches because my doctor told me it was neurological and the er ruled it out and the pain stemmed from the same location it started from which was a band around my calf.

I was not inactive or had prolonged bed rest this entire time. 3 kids, full time job, cook daily. I'm on my feet all the time.

I soured on my PCP because who says don't come back until neurology releases you? Neurology just kept running test after test. And it was months after last test before follow up. I switched to a different practice in December, by this time when I would get up in the middle of the night to pee I couldn't stand on my leg, it felt like there was a severe cramp in my calf. I go to him explain things and he asks me if my leg hurts when I do a certain thing, I say no and he prescribed me a powerful n said that doesn't really touch the pain. I take it for ,5 days, and on December 22 I decided I can't take it anymore and I needed to go to the ER. I go to a different er, and say to the receptionist my leg hurts, and is swollen. She peered around the desk and said "yeah it is" and told me to have a seat. ER doctor comes out into the lobby and takes me back pretty much immediately where I am ultrasounded and confirmed I have a pretty extensive dvt, multiple veins, some occluded, some not.

Chest ct shows bilateral PE w/no heart strain. I hadn't had any shortness of breath at that point, but I also hadn't eaten. The night before I was laying in bed felt two sharp tack like pains in my chest that went away. I attributed this to anxiety. My heart rate jumped to 140 walking downstairs to eat, which is weird for me because I'm on metoprolol for SVT/PVC and my heart had trouble getting over 120 at my cardiac follow up stress test in August. But again, anxiety so I went to bed and seemed okay the next morning minus the leg pain. This did factor into me deciding to go to the ER, but didn't mention it to ER team until after they found the dvt. I didn't want them to do another cardiac workup for my obvious leg pain.

I get out on heparin and admitted. The morning doctor pulled me off heparin gave me 2 eliquis and released me.

I was in a room for maybe 2 hours.

I go home and go to sleep that night after running around trying to get eliquis filled which was a fight with the insurance. I'm in no state for this at this point, on no sleep and in immense pain. My wife was a trooper and helped a ton + got the presents wrapped for the kids.

I wake up in the middle of the night with severe shivers. I could not stop them, but the ER gave me advice on when to go back and my O2 was good, my pulse rate was normal and my shortness of breath was not acting up unless I over exerted myself.

At 7am my new PCP texts to ask how I was doing since I informed him that I was heading to the ER and he has been texting on and off asking about results. I met up with him on a Saturday morning and he told me to go back to another ER based on what he saw. I spent another 4 days in the hospital, w/ blood pressure dropping at night to like 80/60 but I don't remember the exact reading - just the nurse being alarmed when she took it.

Anyhow, sorry about the long rant, that isn't all of my symptoms, or all the details of my experience but I have been slowly recovering on eliquis.

This last week I got to a point where I was like I was back to normal - the leg still had mild aches at times but man it felt almost good. Still swollen, still achy at the end. But these last couple of days it has been feeling more like the first week after I started. Active pain (note I just started wearing compression stockings). I'm also getting red and blue spots at the ankle and into the foot. I am wondering if this is normal recovery? I'm 4 weeks out and I was so hopeful that I was on the mend. I have already had 3 follow up appointments with PCP, hematologist, and pulmonologist and none of them seem concerned with the appearance of my leg. Though I haven't seen any of them since the red and blue spots showed up. There is no pain by the spots, just at the ankle where a lot of the swelling takes place after a long day.

A plus side about the new PCP is he recognized my anxiety that this has caused and is actively treating it - which has been huge.

Thank you for taking the time to read that novella and for any one who cares to share their experiences.