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.
Hi All!
After about of week of being short of breath, my husband finally convinced me to go to the ER on 8/14. Within 90 minutes of getting there I was being transported by ambulance to a bigger state-of-the-art hospital. I was diagnosed with bilateral PE with a very large clot on my right side. I spent six days at the hospital, three of which I was in intensive care. I am on warfarin and have a back-up stock of Lovenox injections because my INR has been fickle. I also still need O2 for activity. My right ventricle is dilated, but they are confident this will heal. At the time I was diagnosed, I was ten weeks postpartum. They believe labor and delivery caused the clots. All of this was very scary, but I remained super positive and actually found myself comforting my poor mother and husband who were both terrified.
About a week after I was released, I went back to the ER with chest pain that I hadn't experience initially. Pain was in the front right and right back at the bottom of my lung and was mostly painful when I took a deep breath. After another chest xray, ekg, ct scan, and leg ultrasound they didn't really find anything except some pleural fluid and signs of atelectasis, neither of which they were concerned about. They believed the pain was due to a small infarct. I stayed for observation for one night and went home with some pain meds. I felt better after a few days.
2 nights ago the pain returned in my back at the bottom of my right lung. It was severe enough that I couldn't really sleep. When I called my PCP in the morning she told me to go to the ER which sent me into a panic because I am so sick of the hospital and don't want to be away from my family. I decided to take a quick shower in case I had a hospital stay ahead of me. By the time I got out, the pain was almost entirely gone and did not warrant a trip to the ER anymore. I am now convinced that the pain was a combo of the atelecstasis resolving (my lung learning to reinflate all the way again) and anxiety from feeling a wierd pain and thinking something horrible was happening. Anyone else experience this kind of pain made worse by subsequent anxiety?
I am feeling much better and am hoping to go back to work part time in a few weeks. In the meantime, I am going crazy at home. The baby keeps me busy but I am dying for adult interaction. How did ya'll manage the boredom of recovery? How long did you wait before returning to work?
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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.
I think most (all?) of us have done repeat trips to the ER and/or doc because of increased pain, shortness of breath (SOB), or other symptoms. For me, I did two repeat trips to the ER (once via ambulance) and both times it wound up being anxiety. I did several panic trips to my doc too, and it was often anxiety, although sometimes other things (carpet cleaning fumes, for one) had caused my lungs to act up. It really was trial and error for a while, and it sounds like you're going through that as well. Giving yourself a little time to rest (showering is good too) to see if things change is a good gauge. If the symptoms go away with rest, that's a good gauge too that it's healing vs. a new problem.
Note that doctors will always, always tell you to go to the ER if you're having any sort of chest pain, history of clots or no. It's just safer all the way around.
I went back to work on a limited basis (four hours a day, instead of a full day) four days after getting out of the hospital. Of course, I was only in there one night although I had multiple clots in both lungs. I took a while to work back up to a full schedule over 2-3 months, but it was nice to be "helping" with the schedule in the meantime.
As for recovery boredom, now is the time to make those phone calls to friends that you never get around it, to read that book you've had for two years, to watch those movies you've always wanted to see. If you can manage it, any sort of activity is good. Even pushing the baby's stroller around the grocery store for 20 minutes will help with your recovery (and get you out of the house!).
I will tell you truthfully that I felt worse at five weeks out than I did when I was first diagnosed. I had just been pushing myself too hard to get back to "normal" and my healing body couldn't take it. I wound up with increased SOB, pain I hadn't had before, and an unreal level of exhaustion. My doc (lightly) slapped me on the wrist and told me to dial it back. I had these bouts of increased symptoms for about 11 months or so, but they got less frequent and less severe over time as I healed.
Also, run some searches on this site and read around. You'll get some good answers from past threads as well.
I too felt really rough that first month or two after diagnosis, more pain than while I was in the hospital for sure. Sometimes weather can affect you as well, like if it's super humid out. I STILL have some days, when it's really hot and humid, or freezing cold, where my chest hurts, and my PE was in 2007 ( holy cow, 9 years this Sunday in fact). I too had a few return trips to the ER (a rite of passage after diagnosis), because I couldn't sort out what was concerning or not. After a while I could just tell what was anxiety driven and what was "normal" for my recovery. Anxiety is powerful stuff. And I do think it creates very similar feelings to a PE.
You are going to be just fine, because I can tell you already get it. Hang in there, take it easy but also balance it with doing stuff.
I'm fascinated how doctors respond to the diagnosis of PEs. At MY request, having been recently diagnosed with multiple DVTs in my leg, I asked my surgeon to check my lungs before my scheduled surgery. I told him I have had shortness of breath for several months so maybe something was going on there, too. You'd think the surgeon would have asked me "I see you were just diagnosed with DVTs. Have you felt pressure in your chest recently or do you suffer from shortness of breath?" but no. I had to bring it up. Sure enough, multiple PEs, upper and lower lobes, both sides. The test was done at the hospital. When they got the results, they sent me home. a few days later they decided to bring me in for a cardiac workup. They told me to pack a bag as they MIGHT want to keep me overnight in the "day hospital". No matter what, they'd reserve me a room to hang out in while the results of the heart work up were being analyzed. I did end up spending the night. Some times my BP was so low -- maybe 100/35. They asked me if I wanted oxygen. (why ASK me? If they thought I needed it, just give it to me!) And before I left the next morning, they told me I needed to stop with the xarelto and go on daily injections of Lovenox (150ml) And they sent me home. It confounds me. Now I understand if you have the saddle thing, everything is acute and they need to keep you in. I didn't have that. But to just send someone home with no "call us if this happens" or instructions, doesn't seem to make sense. Granted, I was going through the oncology section of the hospital, and not the cardiac or hematology or pulmonogy departments. I assume (maybe wrongly) that the doctors confer with each other, but so often THEY LEAVE THE PATIENT OUT OF THE CONVERSATION. Makes me crazy. Can you tell?