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.

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Worried and scared.

ximenag
ximenag

Hello everyone I'm new here. I was recently diagnosed with extensive bilateral PEs on 3/7/17 after having a horrible headache and being tachycardic while at work. I was hospitalized for 2 days and was given lovenox shots while in the hospital. I was discharged on xarelto 15 mg twice a day for 3 weeks and 20 mg daily after that. I went to a hematologist and he drew a bunch of blood and is running tests to see if I have some sort of blood or genetic disorder that may have caused the PEs. The doctor also told me I'll have to be on xarelto for life. I was not taking birth control, did not have any DVTs that could have broken off, or have any family history of blood clots. I am 28 years old, never married, and don't have any children. I cry everyday and am very disheartened by this new diagnosis and lifestyle change. I'm so scared of being on xarelto. I'm a nurse and have seen what bleeding on xarelto can do to a person since there is no reversal agent for it. I know that the cases I've seen are the worst of the worst and doesn't mean that it will happen to me but I'm still terrified. I've spent way too much time reading about what being on a blood thinner can do to you, especially since xarelto hasn't been on the market for very long. Does the sadness every get better? I have a great support system in my friends and family but I just feel hopeless and sad all the time. Thank you for reading this, any comments are welcome.

TGrove
TGrove
It gets better. It takes a little time but it gets better. Your story is just like mine, no reason for it. I did switch to Eliquis because Xarelto was causing side effects. I am currently talking to the hematologist to try to get off of the blood thinners, so you might be able to. Hang in there! You'll get through it :)
Sarahhope0417
Sarahhope0417
I'm in the same boat. I'm 25 with bilateral pulmonary embolisms and saddle clots . I feel your pain. I have been out of the hospital for a month now and still struggle with anxiety because of all I've been through. I will keep you in my thoughts. Message me if you need someone to talk to.
notsopatient
notsopatient
If it is causing you a lot of anxiety it is reasonable to ask for an anticoagulant with a reversal agent instead, like warfarin.
rmb
rmb
I agree, if the worry is no reversal agent, warfarin is an option. I was on warfarin for several years before making the switch to xarelto. I too was worried about it being such a new drug (why I waited for it to be out for a few years before trying it). I've been on some kind of anticoagulant since 2007 and I've never had a serious bleed. I've cut myself, fallen down, hit my head, you name it. I find that I just am more mindful but otherwise, I live life just like I did prior to being on anticoagulants. The risk for bleeding is real and xarelto not having a reversal agent is something to be prepared for, but I do think odds of having a major bleed if you're otherwise young and healthy are probably pretty low. If you were in a serious car accident or something, I think bleeding would be an issue even with a reversal agent. Also, my understanding is that work is being done on a reversal agent so I'm sure in the future there will be something available.

I would try not to read too much on the drugs or PEs while you're still feeling vulnerable and processing everything. It does get better. I went to a counselor about a month after my diagnosis because I was having so much anxiety. So, talk to someone if you think that will help you. Try to keep yourself busy. Distractions are a blessing. You will be ok.
PE_who_me
PE_who_me
I too was diagnosed without having a DVT. It makes me really paranoid wondering where my clots came from. I did have a long flight, but that was my only risk factor.

I know it's normal to have anxiety and depression after a life-threatening event and diagnosis of an illness that may be chronic.

One of the things I've been thinking about is working a little harder on my self-care. I do pretty well taking time for myself to do things I enjoy and help relax me like painting and baths, but I think these things passively relax me. I need to incorporate things that actively relax me like yoga and meditation. I am literally working on a self-schedule to make myself make time for myself.

I hope you find what works for you. Sending you some healing thoughts.
aimzatron
aimzatron
I got my first DVT at 23 with bilateral PE's. I struggled with feeling hopeless because it seemed like it just happened out of nowhere. I also think it is scary to know that the meds they put you on can make you bleed too much or not enough. I have been on Warfarin for nearly 7 years now and I think one thing that helped me feel like I was more in control was getting my own PT/INR machine for home. My insurance covered part of it and it was worth what I had to pay out of pocket to just have peace of mind knowing where I stand. I know that doesn't necessarily work with Xarelto since it works later in the clotting chain and doesn't effect your PT/INR but if you are uncomfortable with the fact that there is no reversal maybe it is better for your peace of mind to ask your Hematologist about taking Warfarin instead.
JCR
JCR
I was recently diagnosed (last month) with pe, they did find dvt. It came out of nowhere! The urgent care sent me home with an antibiotic and said it was bronchitis. Two days later I was in the er because I was so short of breath. I'm having a hard time not thinking there are more in my legs even though I know it's not possible. I have bruising and little bumps on my stomach that turn from bruises to red itchy patches - I'm not totally sure this is normal with lovenox and every little thing makes me nervous. They don't know why and are doing tests. I have been traveling a lot lately but had never had any health issues ever! Also started going to a therapist, it's a really scary thing to go through.
ximenag
ximenag
Thank you all for the kind words.
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