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 everyone,
I've posted a few times in here and I may be starting to sound like a broken record, but I don't know who else to talk to about this stuff.
I'm 4.5 months out in my recovery from my bilateral PE. It was pretty extensive - 70% of my pulmonary arteries had clots in them. I've had a recent CT and lung scan and all my clots are luckily gone. My fear and confusion lies with how I'm feeling now. I know this is still relatively early in recovery, but I'm having weird symptoms.
I tried to go back to work the first week of May, but had to go on leave again. Because even just sitting up at a desk, I feel like I can't breath. It just feels like my lungs are really tight and my heart is beating faster than normal. The only thing that provides relief is when I lie down. I feel okay when I'm lying down.
The other thing that happens is occasionally in my sleep I wake up and feel like I can't breath and my heart is racing. I have to slowly steady myself and get my heart back to normal to be able to catch my breath. Has anyone else had this?
I've been to the specialists a few times. They tried to do and echo stress test to check for PH - but I physically couldn't do the exercise. Possibly because of deconditioning or who knows. My regular echo looked fine with a pulmonary arterial pressure of 22.
I just don't know what to do. I'm so depressed because I'm in my apartment all the time. And I just want to get out and do stuff or even return to work, but I feel incapable and don't know why:(
I also had a catheter ablation done back in Dec '14, so I don't know if that could have caused something weird.
In need of a hug or a pep talk.
Ally
I've posted a few times in here and I may be starting to sound like a broken record, but I don't know who else to talk to about this stuff.
I'm 4.5 months out in my recovery from my bilateral PE. It was pretty extensive - 70% of my pulmonary arteries had clots in them. I've had a recent CT and lung scan and all my clots are luckily gone. My fear and confusion lies with how I'm feeling now. I know this is still relatively early in recovery, but I'm having weird symptoms.
I tried to go back to work the first week of May, but had to go on leave again. Because even just sitting up at a desk, I feel like I can't breath. It just feels like my lungs are really tight and my heart is beating faster than normal. The only thing that provides relief is when I lie down. I feel okay when I'm lying down.
The other thing that happens is occasionally in my sleep I wake up and feel like I can't breath and my heart is racing. I have to slowly steady myself and get my heart back to normal to be able to catch my breath. Has anyone else had this?
I've been to the specialists a few times. They tried to do and echo stress test to check for PH - but I physically couldn't do the exercise. Possibly because of deconditioning or who knows. My regular echo looked fine with a pulmonary arterial pressure of 22.
I just don't know what to do. I'm so depressed because I'm in my apartment all the time. And I just want to get out and do stuff or even return to work, but I feel incapable and don't know why:(
I also had a catheter ablation done back in Dec '14, so I don't know if that could have caused something weird.
In need of a hug or a pep talk.
Ally
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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.
The racing heart and the SOB (shortness of breath) could both be anxiety, even if you don't *feel* anxious when they come on. I had a horrible time sleeping after my PEs, in part because I'd convince myself I couldn't breath or that I'd never wake up if I fell asleep. I also had my heart suddenly start racing a few times (even while just sitting at my desk!). I went back to the ER in an ambulance and it turned out to be anxiety.
I mean, it does sound like you might be deconditioned as well, but anxiety could also be playing a big part. It might be worth talking to your doc about anxiety/depression and creating a plan for tackling them if he thinks that might be an issue for you. Everyone has different comfort levels on this ... therapy, meds, journaling, meditation, hot baths, whatever. I did therapy for 3-4 months and meds for 2 years after my PEs .... it was just really hard to handle the mental aspects of recovery.
As for the deconditioning, maybe start with short walks a few times a day. Even if you're just going down to the end of the block, that will start to help after a while. Slowly increase over time.
Also, are you having any dizziness when you're up and about? Or is it just the SOB and racing heart?
Hang in there! Try to figure out some good alternatives for you in terms of mental balance and in terms of getting some exercise. You'll get it sorted out!
@Rmb - yeah, they didn't even come up with anything after I couldn't do the echo/stress test. They sent me for a lung scan to see if I had anymore clots. The technician told me I had no clots. But the doctor didn't even schedule a follow up. So, I called and booked one for next week. If feels like they're just kind of shrugging their shoulders with me.
I do go for walks every day. Short ones - just about 1 km. But I figure that's better than nothing.
I do have anxiety issues, but it's hard to say if it's that or not. Because even when I'm fully distracted, watching my fav shows etc, I still get symptoms.
You might check with your doc for some anxiety meds, if you're comfortable with that. If you have symptoms and pop a Xanax, and the symptoms go away... then it is probably anxiety and not something more dire. Might be worth spending some time on, even if it is just to rule out the anxiety. No point in going through tons of tests and thinking something horrible is wrong, when you might actually do better with a glass of wine and a hot bath.
I would also try to assess if you have these same issues when you are distracted or engaged in something that keeps your mind elsewhere. That can be a clue as to whether it's anxiety related.
I don't want to poopoo this as all anxiety related either but honestly that was my first thought. It may not be just anxiety but a combination off it, lack of conditioning,
I've had a stress test and it didn't involve an echo but rather the treadmill and then a CT test, and I know for that test, they can use a chemical to up your heart rate vs the treadmill but I understand it's not a pleasant feeling.