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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Newly Diagnosed; What Questions Should I Be Asking

ery123
ery123

Hello, my name is Erin. I am a 23 year old that just graduated college last month. A week ago I was diagnosed with PE and DVT. The CT scan showed 5 blood clots in my lungs and one in my left leg. I started experiencing chest pain a couple months ago. I went to a couple different doctors and they all wrote it off as allergies and worsening asthma. Then a couple weeks ago I was backing packing in Iceland (super scary to know now what could have happened on that trip!) and I had awful, awful calf cramps and my chest pain was horrible, it was like someone flipped a switch in my body in a matter of a couple hours. By the grace of God an appointment opened up the day after I returned home with my home doctor and he ran a blood test, called me back in for a CT scan and leg ultra sound and here we are. I went to a hematologist a couple days ago and he is trying to figure out why. Currently I am on Lovenox shots twice a day. I am just wondering, from people who are going through the same thing, if there are any obvious questions that I should be asking my hematologist when I see him again next week. I am very new to this whole world and have no experience or knowledge about it so any bit of information is appreciated!

notsopatient
notsopatient
I would say three questions, is there any known reason it happened, the related question of how long they plan to keep you on anticoagulation, and if there are any if your usual activities you should avoid on anticoagulation (like say rugby or certain kinds if travel). Oh and what symptoms to watch and seek care for.

After that it's really just giving yourself time to heal and working back up to your usual activities.
soola
soola
You are lucky! I wonder if the exertion of the hiking actually helped push the clots through the heart rather than have them get stuck. I know the worst day of my chest pain (before I was diagnosed) I was hiking up a small hill just to get to a concert venue and I thought my chest would explode. Once I sat down, I felt fine so of course, I never mentioned it to my husband. I did go to the doctor and later and he prescribed an inhaler for allergies. Oh well. Anyway, I'm sure the doc will advise you not to anything that could cause you to fall, hit your head or cut yourself. You will be very wary about every time you hit your shin or stub your toe in the beginning. You will be worried about every cramp or twinge for a while. You get over that. Just keep telling yourself that the meds you are taking are working. after almost a year, I still felt short of breath and asked the hematologist to do another cat scan on the lungs.They don't like to do that because all those scans aren't good for us either. But the scans actually showed that the dye was going past the clots in the lungs this time so they were shrinking. Yay. You might ask if the hematologist thinks you should have a heart work up to see if there was any damage when the clots went through. They do that with an ultrasound too. Non invasive but they push hard on the rib cage with the little microphone thing so that kind of hurts.
kokey560
kokey560
Hi Erin,
We're you on birth control pills? What caused your PE? Just curious as I am in my 20's and mine was caused by the pill.
ery123
ery123
Thank you so much for the information! After 6 six weeks with this they did say the clots came from birth control and traveling. So scary! I will be on Xarelto for 6 months then we will see what/if anything to do!