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.
Hello! I joined this group after noticing a lot of my worries and anxiety-driven research on The Google brought me here often.
I was diagnosed with a PE (Unsure if it is "a" or multiple) on December 18th, after going to the ER the night before and being semi-misdiagnosed with pnuemonia(as I have a bit of pnuemonia). Oh, and also being misdiagnosed on Dec 1st when I went for my first CT for the same pain. I got my PE probably from my Csection on November 22nd. I walked a lot and did a lot of activity after the surgery but alas, I was cursed.
I spent 4 days in the hospital in the CCU after being diagnosed with the PE. I'm 26 and was the youngest and saddly most healthy so my second day I spent in Paeds. But at 1am I had been moved back into the CCU as the Paeds department was understaffed (only one nurse in the evening!) And I was so neglected I spent the entire time in screaming agony or in tears. Also the fact they overdosed me on Iron through my IV. My husband's visits with pictures and updates on our daughter (she was being babysat by his grandparents) were all that saved me.
After heparin and an iron line I was put on Eliquis. The nursing staff were amazing however the doctors were pretty quiet and their visits scarce.
I am feeling much better but I am loaded with questions and I don't see my family doctor for a month. Example: I am not allowed to eat Grape Fruit--with good reason holy scary--can I have an orange or lemon/lime? I cough up spit once in awhile with dots of blood and I had spat up a long strand that looked like bloody snot... when should I go to the ER or contact my doctor about the small amount of spit up? Is it Eliquis, or is it my PE or pneumonia!? I had a Csection, with a spinal shot, do I reinquire the choice of Eliquis or is almost a month inbetween the start of Eliquis and my Csecton large enough!? If I move a whole bunch and do a lot of walking will I have to worry about laying or sitting down to relax for a few hours a night with sometimes getting up?
I have had many moments where I am overcome with fears about being too sick to take care of my daughter ans helping my husband with all our chores.. It is insane how much our mental health and our physical health rely on one another.
Alright! That is my ranting introduction!
Hoping you find some support here! It gets better with time!
I am mentally doing better but everyday I feel the scartissue ache in my lung is a bit of a scare for me still. I recently found out I had a massive pe instead of a moderate.. and I have permanent damage in my lung.
I think getting through my csection recovery also helped me.
I’m glad to hear you are doing better!
If you don’t mind, when you have contact with many doctors, may I ask what kind of drs?
I’m on my 3rd episode with PEs and I’m tired of not getting the care I need. I haven’t found a doctor who can or wants to find out where they are coming from. :(
Thanks in advance
Just wanted to let you know that reading this has made me feel much more at ease, I was diagnosed one month ago and I've been really struggling with my mental health. I've found I have so many questions and so many things to worry about, and being young like yourself (I'm 25) it all seems really daunting.
Anyway, glad to hear you're on the mend and just wanted to say thank you for sharing!