I'll add my quick non-medical thoughts as I head out the door for my CT imaging scan of my lungs this afternon! Really.... I'm four months out and on Fri my hemotologist heard a "different" popping noise in my left lung. I'm still having intermittent sharp pain in my back/shoulder blade region that hits the spot near my lower left lung.

My doctor said if it would make me feel more comfortable... he would order the CTA test for me. I'm a bit nervous to find out the results, but know that this will also give me peace of mind to know how the coumedin is affecting my pulmonary emboli and lung infarction. If anyone happens to stumble on this message... please say a prayer for me!

I think it's a good idea to get tested so you have a baseline of where you are now...
especially since you tested positive for a genetic clotting disorder. Hmmm... just my thoughts. Of course, you probably know that your INR levels need to be therapeutic. I don't know if DVT therapeutic is the same for PE's, but my doctor is happy with 2-3 INR levels. BTW.... it sounds like PE symptoms to me, but I'm not a doctor! Do what makes you comfortable and most docs in the US will order a test and IF not.... get another doctor, if necessary. Hang in there and glad you found dailystrength for PE's. I'm sure you'll find lots of info on the DVT sight, as well.

PE's are definitely one of the hardest medical conditions to determine unless you have the telltale signs - shortness of breath either when active or resting, chest pain much like a heartattack, coughing up blood, rapid heartbeat. Even the telltale signs can be several other medical conditions which is why it is often overlooked.

Other symptoms might be less suttle. In my case I was hospitalized for a DVT in my left leg (from ankle to hip). While hospitalized the doctor became concerned about my resting heart rate which was being monitored. He ordered a lung scan which revealed a wedge shape in my right lung. If I wasn't hospitalized for the severe swelling my leg I might have overlooked the PE because I didn't have any other symptoms.

Regards,
Tom

Sounds very close to my symptoms. I went into the ER because I hurt really bad and couldn't breath. They treated me for a pulled muscle and sent me home. I went another 5 days with minor pain that came and went. I saw my doctor on the fifth day. I wasn't having much pain, I had a fever, but I felt OK. I had a CT and it showed the clot in my lung.

The pain I had leading up to the ER visit felt like muscle pain. Like when I do too much ab workout. But it was on one side only. It was terrible just annoying. The pain I had when I went to the ER felt like it was my ribs. I was really out of it and though I had a broken rib or something. There was no way I could have injured my ribs though.

Prior to the PE I had a pain in my leg in my calf just below my knee. It felt like a bruise but I had no mark. It didn't hurt terribly either. Then that stopped and I had a pain in my foot that felt like a stone bruise. Like I had stepped on something. It hurt enough that I was limping a little. I thought I had stepped on a rock while running outside.

The pain of clots and PE is confusing. I didn't feel like anything serious to me. I work out and I'm used to little aches and pains. This has made me a bit paranoid now. I'm probably going to run to my doctor for ever little thin now, but better safe than sorry.

I could copy/paste the first half of your first paragraph as my symptoms, only for me the pain did not go away, just became more intense and I couldn't sleep at all (propped up - which I did - or not). It just started out as a funny stitch on my right lower rib cage/upper abdomen (they initially thought gallstones bc of this). Over the next 3-4 days, it eventually wrapped around to the back, and became a sharp stab in my right shoulder blade. The worst pain was definitely still the rib cage area and every time they made me lie down in the ER to perform a test or a scan I just wanted to die! Morphine and dilaudid did NOT help. In a way, I'm glad the pain got as bad as it did, otherwise I would have gone home and waited for my scheduled sonogram two days later. Who knows what could have happened?

I agree, it was difficult to pin-point and difficult to describe - the rib cage pain was almost like a searing or ripping (easy to imagine that it was gallstones), and I had a dull ache in the center of my chest and the stabbing in my shoulder blade. Turned out I had multiple bilateral PE (but had no pain on the left side at all). I believe the pain came from all the fluid around my right lung, which they called "pleural effusion."

Apparently I was difficult to diagnose because the pain came first and the shortness of breath came later - I actually thought the shallow breathing was because I was in so much pain. Anyway, supposedly the tell-tale sign of PE is shortness of breath, and can often mimic the signs of a heart attack. Of course, I'm not a doc, but my own personal opinion is: I would wager you had a PE. I'm curious as to whether or not you have any residual pain now?

If I put myself in your shoes, not knowing ... I would probably insist on a scan, but at the same time ... even if you get a scan now, any clots that might have been there may be gone by now anyway. You may never know for sure. If I put myself in your shoes knowing what I know now ... I'd just rest easy. As long as your INR is at the therapeutic level for warfarin, you're "set." Do you know how long you'll be on it, or are you on it for life? If there's the chance that you'll be coming off any time soon, I would insist on a scan beforehand, especially with testing positive for Factor VLeiden.

It's too bad the doc was so nonchalant about the PE because it's definitely traumatic to hear that news! At the same time, you were on the absolute right meds - the treatment is the same, so you can take comfort in that.

As for the clots causing the fatigue ... hmmm ... entirely plausible in my own case as I don't get too tired anymore (I'm 4.5 months post PE and likely clot-free), but there are others here who are still super-tired many months later and their clots are likely gone as well. Of course, anxiety, depression and a whole host of other emotional issues could be at play with the fatigue, too, so it's hard to say.

Take care!

Hi all, I had extreme SOB, chest pain, high heart rate - My Dad od the other hand had NO symptoms at all. His PE was discovered accidentally when he was having his belly scanned for a flare up in his crohn's disease. There are some"classic symptoms" that were mentioned by Tom, but these are not the only symptoms, or there may be none. Blessings, Teri

Thanks folks, this has been very helpful.
I do continue to have the occaisional pain in my shoulder & rib area, and it feels much like the pains in my leg & thigh from the DVT; kinda sharp and jabby from time to time. After seeing your stories, I'm thinking that it was PE pain. I've never experienced anything like it before, and hope I never do again. I think the hematologist was nonchalant because he didn't want to alarm me when there wasn't anything we could do about a past event. I'm easily alarmed, even if I'm slow to do anything about it!
This also will help in my decision on whether to stay on warfarin long-term or not. Even though I'm FVLx2 AND B bloodtype, AND love long-haul travel, I may have taken the chance of living without it if this DVT was just a singular event. But believing that I also had a PE puts a whole new spin on things. Don't think I want to live that far out on the edge!
I think I will skip any further testing for now.

Hi, The symptoms you described are exactly the same as what I had, In my case I had severe pain in my side and up towards my shoulder, this became worse at night and I found it impossible to lye down, deep breaths / laughing or coughing were also very painful but only in the days after diagnosis not before.

I went to the 24hr emergency doctor who after seeing me diagnosed fluid on the lungs, being a young person who had no other symptoms that would cause this he sent me straight to Hospital for further tests, 4 hrs and a CT scan later I was told I had a couple of very large PE's and would be staying in hospital for a while, I had the emergency injections followed by a 6 month course of Warfarin, I'm 2 months in, so only 4 to go.

I would suggest what you experienced was a PE, I aslo ignored the pains the first night and only went to the doctors after the second night of no sleep and being dragged there by my mum.

The warfarin should be treating all your clots, assuming your INR is kept above 2.0 this should clear them up within 6 months.

Keep well.

The pain you describe is almost identical to what I felt with my PE!! It was hard to describe and pinpoint exactly what it was. At first I thought it was a pulled muscle, but that didn't really seem right. My doctor didn't really think much of it at first - but then as his testing progressed and they found out I had a PE - he started taking it a bit more seriously!

in my case, i got all of a sudden very short of breath, followed by the sensation of being kicked in the chest for the next two months. straight. by a big unit in jackboots. and he cleaned out my pockets while he was at it.

if you have a dvt that big, have they had any discussion of thromboectomy with you? it sounds like he could been a bit more sensitive about it, but youre right, the treatments are identical. by that point you had already lived through the event, so theres not much reason to make you pay the copays on CTs or extra labs.

You've all been very helpful - I read the "textbook" symptoms online and I didn't fit all of the classic examples. But then, I didn't fit all of the online examples of DVT either - my leg wasn't hugely swollen or dramatically different in color or burning hot as I'd expected it to be, despite the size of the clot. If it weren't for the DVT, I would have written off my mystery chest/back pains as just some freak episode of body rebellion. Reading your responses, plus my my doc's response has me convinced I did experience PE prior to the DVT. Doubt I'll have a scan unless some new pain developes.
PATASTROPHE: Regarding other options for clot removal-none of my docs mentioned other options, and info I've read on the subject seems to caution against it. I've developed some really cool new veins to keep blood flowing around the clot in my calf, so no reason to risk major veinous scarring or major bleeding from injecting the vein with powerful clot busters. Guess they only do that if your life is endangered, like in the case of arterial thrombosis.
Thanks again everyone!