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.

1,102 Members
7,473 Posts
0 Online
Lungs & Respiration
/ Pulmonary Embolism Support Group

Terrified of this happening again!

Chante2017
Chante2017

Hi there, survivors and those who knew someone that suffered from this terrifying thing I am new here and so greatful I found a group like this. In August of 2016 I suffered from bi lateral PE moderate burden which went under diagnosed until I couldn't even walk with out almost collapsing from shortness of breathe and tachycardia i was complaining of chest pain for a long time before hand but wad blown off due to pregnancy. I was a lot more fortunate than many people as I know for some of you the point you are diagnosed is when you are on a stretcher fighting for your life. I was put on xeralti for 3 months which I was shocked that the time frame was very short I stopped blood thinners Nov 16 any way I am not terrified that It will happen again even now having had a "clear" ct last week due to pain in my rt lung that is still there tonight I say the term clear loosely as that's what they said a week before I almost died as the contrast they put in my I V line blew my vein and they thought they got a good picture sorry for rambling but as I sit here tonight with my baby in the same pain I was in when I was soo very sick with no help from my Dr's I am feeling scared and lost.... any experiences on what I could do to either not be so scared or get someone to listen to me Dr's wise that would be great. Thanks all who read this again I'm sorry it is soo long. 

PE_who_me
PE_who_me
Congratulations on yoyr new baby. I'm sorry that happened before, that's terrible. Did they run a d-dimer blood test on you? I'm not sure how far out postpartum you are as it might affect your result if you're super close.

Some people here talk about it being normal a couple years out to still experience symptoms. That's not really helpful when you're trying to differentiate what is normal and what is emergency. However, my thought is, if you are concerned keep going back to the ER until someone listens. Personally, considered going to another ER just to get another facilities opinion.
rmb
rmb
I think if you feel you are having PE symptoms, go to the ER. That's not unreasonable.
Sarahhope0417
Sarahhope0417
Hello there. My name is Sarah. I am 25 years old and still suffer from the anxiety of going through the same thing. I was diagnosed with bilateral and saddle pulmonary embolisms in March 2017. I'm a little over a month into my recovery and it terrifies me every single day. The doctors told me I will be on Xerolto indefinitely because my embolisms were unprovoked . I still get chest pains and my heart races most days. My legs ache and I have little pinpoint red dots all over my legs from the Xerolto. Apparently it's a common side effect? Anyways, I am here for you if you ever need someone to talk to that understands what it's like to go through such a life changing diagnosis.
Chante2017
Chante2017
Thanks everyone! I have been to the Dr getting my d dimer re done tomorrow the anxiety of this is tormenting I have three kids and my embolism was to far after the birth of my son to be pregnancy or post pregnancy related they have not tested me for a darn thing but I will keep fighting I am on anti anxiety medications already due to having anxiety/panic disorder and depression much to my demise this PE crappy makes things about 1000 times more difficult for me to control my anxieties. Anyways I could ramble for days so lucky to have found this site thanks all who commented and took the time to read my story.
Posts You May Be Interested In
  • GreenEyes727

    Caricatures

    Posted by: GreenEyes727
    Last Reply: Tired
    6
    Look at what my best friend did with my picture!
  • GreenEyes727

    Truths

    Posted by: GreenEyes727
    Last Reply: GreenEyes727
    14
    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.