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.
Just two days after giving birth to my second child, I was diagnosed with a small pulmonary embolism in one lung. My initial symptoms were virtually nonexistent - mild, intermittent shortness of breath and a little pressure in my lower chest - but because I was postpartum, they ran every test imaginable.
I know that I don't have any more clots hiding in my legs because they did leg ultrasounds that came back negative, and I'm now on xarelto, so I'm not terribly concerned about MORE clots. Even the one I have is apparently small and has caused little to no heart damage.
Still, since being released from the hospital on xarelto, I've continued experiencing intermittent shortness of breath (never severe but always annoying) and chest pain that accrual seems somewhat worse than it was when I was first diagnosed. The chest pain also now radiates to my back and reminds me of upper GI pain more than anything. To make things more fun, I've also got terrible anxiety and I'm absolutely exhausted 24 hours a day.
I'm frustrated because while the hospital staff repeatedly reminded me that my condition was life threatening (I wanted to be released sooner rather than later to be with my newborn), they also released me with virtually no guidance regarding recovery. I'm to take my xarelto, follow up with a pulmonologist in 2 to 3 weeks, and return to the ER "if I can't breathe" (I mean, obviously...).
So... what's normal? What's not?
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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.
It is a hard thing to reconcile, that it’s such a life threatening situation when you are diagnosed but then once you are on treatment it’s all kind of benign.
I would really try to do things like body scan meditation (google it) which helps to slow your thoughts down and really get in touch with your body in a healthy way vs a hyper vigilant way. Doing that helped me recognize if my breathing issues were more anxiety induced or something more concerning.
You’ll be ok.
I hope when you read this you are feeling better. Such a special time having a new baby, so sorry you've got this to deal with. I honestly think the extra pain and struggles you are dealing with are side effects of the xalerto. I had a malaria like sickness that had me in bed for almost 3 weeks. I then went to the ER and they discovered a PE. I have been on Xalerto for about a month and feeling better except dizzy and tired and random pain and discomfort. At first I thought I was still recovering from being ill, but I'm starting to conclude it's the X. I did some research and asked my doc to switch me to Eloquis, hoping for less side effects, plus it has some advantages over X and appears to be safer. Something for you to consider. Just take it easy on yourself and take care of you and your baby, that's a tall order even when you're feeling strong. Get some help with your mental health because there is a strong mind/body connection. Just keep taking small positive steps. I'll be praying for us both.