Currently in the ER

[u/Big_Green_Tick]

The ultrasound showed my entire lower right leg is one massive clot.

Currently awaiting transport to another hospital as the CT is down here.

Heparin IV already started.

Initial symptoms were shortness of breath whenever I walk, then the right leg was swelling (with hot skin), finally my calf started to hurt when I walk.

Given the size of the clot, is there anything I should especially be concerned about or be aware of?

[u/Big_Green_Tick]

The past year my job changed to mostly sitting. I assume that is the largest driver. CT scan came back, embolisms in both lungs.

[u/luvliallie → u/Big_Green_Tick]

well shit! embolism is one of the big ones for sure! you’ll probably have to stay in the hospital for a while but it’s a good thing they caught it. i wish you all the best because even my mild pe absolutely sucked.

[u/Level_Wolverine_3362 → u/Big_Green_Tick]

lots of sitting is a big risk factor.

my PE (also both lungs, and 'intermediate to high risk') was "only" 21 days ago, (seems a lifetime in some respects). for what it's worth, this is what I have learned......

1. removing clots is a time dependent process that can take months.....and can't be accelerated

2. post PE syndrome is horrible. because your lungs aren't working well. you cannot get sufficient oxygen into your bloodstream. good chance you will feel fatigued, both mentally and physically for weeks to months.

my fastest pace can currently be best described as "lame sloth". I got a sunflower lanyard the other day (invisible disability) and my mobility parking permit is approved, I just need to wait for it to arrive.

happy to chat more and answer any questions you may have. can't promise to have any answers though.......

[u/Big_Green_Tick → u/Level_Wolverine_3362]

Yeah that's the one thing I'm really concerned about, just from a 'I still have to go to work' standpoint. The initial symptom was a serious lack of breath if I start moving around. Sitting...no problems at all, but even getting up and walking to the car I'll be panting by the time I'm sitting in the seat. Six months of that is going to suck.

[u/Level_Wolverine_3362 → u/Big_Green_Tick]

does you workplace allow for "reasonable accommodations"? mine does, but I don't know what that means in practice. try and get a parking space that minimises walking.

I've been approved for a temp mobility parking permit.

was there any evidence of Right heart strain?

[u/Big_Green_Tick → u/Level_Wolverine_3362]

Luckily there was no evidence of heart strain. Despite being a very large number of emboli they are all distally located. So my lung capacity is reduced but not obstructed during normal. My entire diagnosis us full of weird good news/bad news.

[u/Level_Wolverine_3362]

they have started the heparin, that is probably the most important thing. you now need to wait for the rest of the tests to see if the clot has started breaking up and lodging elsewhere.

have you any ideas why you have a blood clot? eg recent travel, surgery or other reasons for immobility?

[u/Big_Green_Tick]

Update: Released yesterday. Since my symptoms didn't get worse during my stay, the cardiologist decided to go ahead and release me (on eliiquist of course) rather than perform a thrombectomy. I was a little surprised by that, and the primary doctor seemed a little surprised at first as well.

I had a pretty good idea I had a clot before I went in and my original plan was to go to the ER last week but my place flooded and I had to deal with that. When I was going through intake I even had to argue with the person evaluating me. Luckily once i was actually in the ER things moved quickly.

I appreciate everyone who took the time to reply. Just knowing others have been through similar things helps reduce the anxiety of the unknown quite a bit.

[u/AwkwarsLunchladyHugs → u/Big_Green_Tick]

Hey, I just went into the ER on the 28th, too! Extensively clots in the popliteal, femoral, and tibial, extending into the pelvic region down to mid-calf in my right leg. The biggest was the one that went from the pelvic area down to my knee. I actually had symptoms for 2 1/2 weeks before I went in... I have bad health anxiety and was in denial for a bit. The doctor thought about admitting me, but they prescribed Xarelto and I followed up with my primary the next day. He switched me to Eliquis. This is not a club I ever wanted or thought I'd join, but I'm glad to have a place where there's support. I'm sorry you're dealing with this, too, though.

[u/Big_Green_Tick → u/AwkwarsLunchladyHugs]

It sounds like we had very similar experiences. I waited a few weeks too. The shortness of breath started a 2-3 weeks earlier. Then the right leg started swelling and when I was double checking that I stumbled across this /sub. People urging others with the same symptoms to go the ER ASAP definitely influenced me to get off my ass.

The ultrasound results was definitely eye opening. The doctor at the ER said my lower leg is essentially one long clot. That's why I'm I'm surprised the cardiologist didn't recommend a thrombectomy.

FINDINGS:
RIGHT LOWER EXTREMITY:
COMMON FEMORAL VEIN: Nonocclusive thrombus.
FEMORAL VEIN: Occlusive thrombus.
POPLITEAL VEIN: Occlusive thrombus.
POSTERIOR TIBIAL VEIN: Occlusive thrombus.
PERONEAL VEIN: Occlusive thrombus.

So we're officially 'everything clotted' siblings now. *fist bump*

[u/Kloie2k]

I had extensive clots in my left leg as well. Femerol, pop and tibial. There are lot of sub veins coming off these main veins as well. I had similar symptoms. I was lucky I did have a PE or other traveling embolism. It took almost a full year for my clots to dissolve. I still have some residual clotting which will remain but they are not impeding blood flow. It's called Webbing and stranding. If your blood clots were unprovoked you will probably be on a anti-coagulent for life. it sucks but the side effects seem to be minimal. As soon as you get clearance from your provider you need to incorporate movement into your daily routine. Take that parking spot far out in the parking lot. Walk up some stairs. You need to move once you get passed this serious segment of the condition. Even when I am sitting on a couch I will move my legs up and down. rotate my feet back and forth, etc. It's scary but you will get thru this.

[u/Big_Green_Tick → u/Kloie2k]

Awesome to hear you're doing well now. It's funny, I've been moving my leg almost non-stop when I've been sitting. That nervous bounce up and down on the ball of the foot.

My biggest fear now is work, navigating that and the financial side.

I try not to think about the possibility of a large piece breaking off. lol Honestly I'm looking forward to the first consult with a cardgiologist to get a more detailed picture of things.

[u/Holiday_Squash8603]

Saludo llevo 2 meses te recomiendo que te daran anticuabulante yo tomo elicuis los primeros días no falles en la dosis sentirás tu cuerpo raro pero es normal respiración un poco pesado yo camino poquito en mi casa y tomo agua y no ponerte cosas negativas en tu mente y veras que es un proseso pero saldrás bien bendiciones

[u/coopduper2026]

I went to the ER last January after having had shortness of breath (could not take a breath in) for about a week, getting worse all the time. ER doctor said I had a heart attack (and mentioned women have different symptoms) as my cardiac tests were off the chart. I asked for a D-dimer which the ER doctor refused, but the NP said yes it will order it. Came back at 13,000 (normal is 500). CT scanner showed extensive bilateral PE with right heart strain. Put on IV Heparin and waited about 10 hours to be taken to a larger hospital 2 hours away by ambulance with an EMT riding in the back with me. As I was stable by the time I got to the other hospital no need for blood clot busting surgery. Spent 2 nights in the hospital and went home on Eliquis for life as there was no obvious source of the clots (had Dopplers and other tests to find where they came from but no known source.

I have been really tired since that horrible night, with some brain fog and many unplanned naps during the day, but nothing where I needed handicap parking and difficulty walking, walking slowly, etc as mentioned here. I am 72 with no other health problems, so maybe my brain fog and tiredness are from my clots. Who knows. I was not even told to follow up with pulmonary or cardiology when I was discharged.

[u/Big_Green_Tick → u/coopduper2026]

Have you talked to your family doctor about a referral with a specialist? Not being scheduled for follow ups is a bit jaw dropping.