Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
So I had a PE about 2 1/2 months ago. My legs were scanned in the hospital and no DVTs were found. I am currently 7 months pregnant and am on Lovenox shots of 60 mg twice daily. I am dealing with some pretty considerable anxiety (although it seems to be getting more manageable and I am seeing a therapist).
Here's the story. I had been really proud of myself for not letting every twinge throw me into panic mode. And I must say my recovery has been quite good and I really feel almost completely normal with the occasional twinge of pain here and there in my chest. I was lucky in having very few physical symptoms after treatment but in the beginning it was very hard distinguishing what are pregnancy symptoms, PE symptoms or anxiety.
Last week my calf tensed up when I was sleeping and caused my foot to flex. There was a little pain but nothing serious and off and on. I have sciatica and with pregnancy it's becoming symptomatic so I thought it was that. Which makes sense but for the first time I went into panic mode and said but what if it's a clot. So I went to a walk-in near my work place and the doctor examined the leg and said she wasn't too worried but sent me for a "just in case" Doppler at another medical building (not the hospital). A couple days later they called me back and said they found no DVTs but saw something which might be a possible superficial clot (they actually put a ? on the report). I freaked out thinking this means my blood thinners aren't working. The doctor at the clinic (who looked like he just stepped out of medical school) didn't know what to tell me but said he would call someone to ask. (Really boosting my confidence in him). They said they would refer me to a specialist. Anyway once I got home from work I went to the hospital near my home and the doctor there said it was nothing to worry about, the thinners are working, he would send me for another scan at the hospital in a week for reassurance but he doesn't expect to see anything.
My hematologist also said that thinners were working. I was on the right dosage. I was protected and to try and relax. He seemed irritated that I got the scan at all.
None of the doctors seemed too concerned.
But I don't get it. If it really was a superficial clot (which is the question) isn't that bad that it developed when I was on thinners? The only thing keeping me sane right now is that the thinners are protecting me. Now I think I'm Lovenox resistant, have cancer, and the clots are just gonna get me no matter what I do or medicine I take. Which has jacked my anxiety up again.
I work in a big City (Toronto, Canada) but I commute there from a smaller place (Markham, Ontario) and the doctor at the "big city" hospital said there were "no good hematologists in Markham" and said to refer me to someone in Toronto. So now I'm wondering if I should trust my hematologist at all.
Did I mention my anxiety:)
Any advice would be greatly appreciated.
Here's the story. I had been really proud of myself for not letting every twinge throw me into panic mode. And I must say my recovery has been quite good and I really feel almost completely normal with the occasional twinge of pain here and there in my chest. I was lucky in having very few physical symptoms after treatment but in the beginning it was very hard distinguishing what are pregnancy symptoms, PE symptoms or anxiety.
Last week my calf tensed up when I was sleeping and caused my foot to flex. There was a little pain but nothing serious and off and on. I have sciatica and with pregnancy it's becoming symptomatic so I thought it was that. Which makes sense but for the first time I went into panic mode and said but what if it's a clot. So I went to a walk-in near my work place and the doctor examined the leg and said she wasn't too worried but sent me for a "just in case" Doppler at another medical building (not the hospital). A couple days later they called me back and said they found no DVTs but saw something which might be a possible superficial clot (they actually put a ? on the report). I freaked out thinking this means my blood thinners aren't working. The doctor at the clinic (who looked like he just stepped out of medical school) didn't know what to tell me but said he would call someone to ask. (Really boosting my confidence in him). They said they would refer me to a specialist. Anyway once I got home from work I went to the hospital near my home and the doctor there said it was nothing to worry about, the thinners are working, he would send me for another scan at the hospital in a week for reassurance but he doesn't expect to see anything.
My hematologist also said that thinners were working. I was on the right dosage. I was protected and to try and relax. He seemed irritated that I got the scan at all.
None of the doctors seemed too concerned.
But I don't get it. If it really was a superficial clot (which is the question) isn't that bad that it developed when I was on thinners? The only thing keeping me sane right now is that the thinners are protecting me. Now I think I'm Lovenox resistant, have cancer, and the clots are just gonna get me no matter what I do or medicine I take. Which has jacked my anxiety up again.
I work in a big City (Toronto, Canada) but I commute there from a smaller place (Markham, Ontario) and the doctor at the "big city" hospital said there were "no good hematologists in Markham" and said to refer me to someone in Toronto. So now I'm wondering if I should trust my hematologist at all.
Did I mention my anxiety:)
Any advice would be greatly appreciated.
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
Every scab you've ever had, every bruise that didn't just keep getting bigger, every papercut that didn't cause you to bleed out ... those were all superficial clots. Even when you're on thinners, your blood will still clot to some extent. I mean, even though we are all on thinners, we also all know that we won't just keep bleeding from a nick on the hand, and that's because of superficial clotting. Our blood DOES clot, it just takes longer than usual. You really don't want blood that doesn't clot at all.
I mean, I don't know enough about ultrasounds to offer suggestions for what the possible superficial clot might be ... if it even exists. It is possible that there's no clot at all and the angle was weird or something. Really hard to say. BUT, I'm inclined to go with your doctors that aren't too concerned. A superficial clot isn't really a big deal, regardless of whether you're on thinners or not. In many cases, you WANT superficial clots because it means you won't just keep bleeding.
We really all do get in the zone of "clots are bad!" without remembering that blood makes clots for a reason .... some clots really are our friends.
I will note that I would get leg cramps for ages after my blood clots. I had distinct DVTs, though ... you might try upping your potassium intake and see if that helps with those nighttime cramps (if you're getting them a lot).
As for the anxiety, that really is a b$tch. I'm five and a half years past my PEs and I can still freak myself out about stuff, even if I know why the pain is there. I wrenched my leg at one point, sitting down in a spin-y office chair. I knew it was going to hurt for a few days and I was still in a state of wound-up anxiety for the entire weekend. At this point, I try to name it (I'm feeling anxious!), warn my husband, and then do my best to get on with life. Not always easy, but it sounds like you've been doing an awesome job tackling this so far, so hopefully you have some good habits to fall back on.
It really can be hard sorting out all this information, so I don't blame you at all for being confused and anxious. But, take a deep breath, think about what you want to do next (do you want a repeat scan like your doctor offered? do you want to sign up for a bunch more doctor's visits?), and move forward from there. There's no wrong answer here ... you just do what will help you (and your anxiety) the most.
Hang in there!
I don't know what your doctor meant by there being no good hematologists in your local area. Does that mean they're all incompetent or that they aren't experienced in the newer anticoagulants or they don't know how to treat blood clots? That comment would have pissed me off because all it does is plant seeds of doubt and implies you're not being treated correctly. I mean, it's an age old issue, blood clots and anticoagulants and it's something even regular doctors address, not just hematologists, so why would he assume your current hematologist has no idea what he's doing. It would be different if you had a blood disease or critical illness where you want the best hematologist on the case. I don't mean to diminish the serious nature of blood clots but I just think, treatment is generally not rocket science, based on what I know.
I agree that it sounds like you've been doing really well. Don't let these guys undermind your confidence or create mistrust. If it would ease your mind to have another scan to see if they can determine if there really is a superficial clot present, then maybe that's the way to go. Trust yourself. Trust what you know for sure. And take it one step at a time.
Hang in there girl!
TossNTurn all your words make me feel much more comforted. I'm going for a repeat scan tomorrow, which is making me a bit anxious. Between writing this post and then I have felt almost normal and have had no further pain. Now that it's coming up I'm starting to worry again. I'll be so anxious again if they find anything.
rmb: I totally agree that the doctor saying there were no good hematologists in Markham really freaked me out. Like I wasn't getting decent care. But I did speak to my hematologist and he agreed with you and TossNTurn in that I shouldn't go to walk-ins. He said they don't have the standard of equipment that hospitals have, etc. and that I should try to relax...that I've been scanned and that I'm on the right treatment, etc.
wilsteph: Your comment helped a lot. Even though it may be a superficial clot (which no doctor so far has been concerned about) it just freaks me out that I have a clot at all. I want to be clot free:)
Seethur: I'm seeing a hematologist in Markham but the walk-in suggested one at St. Mike's too. However I have never been contacted with my referral and that was a week ago. Do you find yours helpful? I'm sorry you are having anxiety. I know it sucks for sure. If you ever want to talk let me know. I'm no expert but I know just talking with the people on this board makes me feel better. A week after I suffered my PE a girl in my office also suffered a bilateral PE. What are the odds right? It was so strange that two of us within a week of each other had one but it has been really great in the fact that I can talk to her. She certainly isn't as anxious as I am about it which actually gives me comfort because I watch her just getting on with life and planning into the future. It makes me realize that you can have a different mindset about things. I've been trying to follow her lead and it mostly works. Trust me I'm still have high anxiety moments but it's getting better.