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.
Hi to all.
I was just diagnosed, still in shock, but grateful to be alive.
Just some background...early last Friday morning, I had severe left side flank pain, went to the ER & a CT scan found small clots (don't know how many) on the right side of my lung. I was given a shot of Lovenox in my stomach & started on Xarelto. I was kept overnight for observation. Previously, I was a healthy 66 year old, active woman, non-smoker, who took only Vitamin D. Docs think I developed the clot due to my recent immobilization in bed wih the flu. (My mother had DVTs tho) My EKGs were all normal and vitals + blood work all good. But, I'm still terrified and have no clue of my prognosis. I'll see my regular doc on Tuesday and I'm told they will run further tests to make sure there is no underlying issue that needs to be treated.
Weird thing...2 weeks ago, I had the very same pain, but on the other side (right) that disappeared. So, would the pain for a right lung clot be experienced on the left or right side? My pain on the left side is gone, but now I have mild soreness on the right side leading down to the groin area, plus shortness of breath that has improved since Friday. Is this all normal?
I'll know more after I see my doc, but I'm so worried about the side effects of xarelto & whether I'll be on this drug forever. I still have so many things I want to do in my life--like traveling, skiing with my family--and I'm fearing that's all gone.
I'd appreciate any input. Thanks in advance.
I'm so glad you are alive!
If you read through the past posts, you'll see that we all have similar questions when first diagnosed. I probably can't answer any of your specific questions, but I've been there wondering and worrying about anything and everything in the months following diagnosis.
I took Xarelto for a little less than a year and then switched to Eliquis. I have been on a bloodthinner for 16 months now.
Be sure to find a good doctor who can direct you and answer your questions! My primary care and hematologist are wonderful.
Tomorrow is my first appointment with my primary doc and I'm anxious to hear what he'll say. I'm hoping this is related to my immobility and family history & not some horrible underlying condition.
Initially, my doc thought I'd be on Xarelto for 4 months, but the blood tests came back and my ANA level is elevated--he called it "lupus anticoagulant antibody." It's what causes miscarriages, but is found in healthy people fighting viruses too. Doesn't mean I have lupus--I have no symptoms of that disease.
So, the plan is to keep me on Xarelto and retest me in 12 weeks to see if the ANA level is still elevated. If it is, I'll see a hematologist and likely be put on coumadin, until the ANA is resolved.
I still have pain in the lower flank on the right side where the smaller clot landed. I was doing so well for 2 weeks with just achiness, but last night I got a sharp pain when breathing in. My doc thinks is a normal part of the clearing process.
So, this is quite the journey with ups and downs. I was hoping I'd be on a blood thinner for 4 months and then done, but that is now up in the air.
I wonder has anyone else had blood clots with elevated "lupus anticoagulant antibodies"?
Hope everyone is doing well...
I'm hoping to stay on Xarelto or Eliquis, if my hematologist approves it. That all depends on my antibody test results, and since you can get false positives for the LA test when on an anticoagulant, I'll need 2 other confirming tests. I have no symptoms, other than blood clots.
Sorry you had problems on xarelto...so far, I've not had any side effects. But, I'm just on it for just over 2 weeks. I'll PM you about the other forum.
Be well :)