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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soola
soola

I started posting about 2 months ago when I was diagnosed, although in hindsight, I had symptoms of PEs before last Christmas.   


To update, I was diagnosed with endometrial cancer and was supposed to have a full hysterectomy last May. But the week before surgery, my leg swelled up. I had the ultrasound that told me I had clots.  That postponed the surgery by another month as they immediately put me on xarelto pills.   The doctor ordered a pelvic ultrasound to make sure my cancer was still in the early stages and I suggested that the doctor might want to a CT of my lungs that day, too -- as I was short of breath.  Results of those tests - cancer still seemed early stage and I had multiple bilateral clots in my lungs.  I immediately went on daily lovenox shots - 150 mg once a day, and surgery was postponed until next thursday, at which time i will have been on thinners for the minimum of 3 months, which seems to be protocol for surgery.



Now the doctor is going to do the surgery laparoscopically to get in and out fast. I take my last heparin shot 24 hours before surgery and he will put me back on them as soon as he feels confident post-surgery.  The theory is, the cancer caused the clots  and hopefullly once the cancer's out, the blood will go back to normal.


I met with the pre-op guys last week and asked the anesthesiologist what the plan would be if a clot started moving during surgery. I fully expected a response  like "oh, we use a catheter" or a "clot buster"  but no, his answer was "We do CPR".  


Would that unnerve you???  It sure creeped me out.  Now I'm even more nervous about my surgery this coming week.   My question is, who out there in PE land have had surgery, knowing there were still PEs  (and DVTs for that matter) that could still be "active"?  I suppose the odds of anything moving are as remote during surgery as they are during life, but sheesh.

rmb
rmb
I was under the impression once your clots are in your lungs, there's no where for them to go. I think at this point the clots in your leg are probably stable. The more concerning risk with surgery would be new clots, I suspect. So I think in that case, hopefully they have you on lovenox as soon as possible. With my gallbladder surgery, I was back on lovenox the same day as my surgery. I think your surgery probably has more bleeding risks so they probably will want to be sure your good to go that way before starting you on lovenox.

I don't blame you for being unnerved. It's a whole lot of what ifs, and it's all a risk. I think you just have to try to put your trust in your doctors. The good thing is they are likely going to be super attentive with you and monitor you closely given your situation. That's the positive.

I am happy for you that they are moving forward with the surgery. You've been through a lot. Keep us posted!
soola
soola
I did ask, at one time, if there was any possibility the clots could back up in your lungs and start moving around again, and was told it was highly unlikely. So I'm not worried to much about what's already there. I guess my worst case scenario (in my mind) would be that there's a floater somewhere below the heart that still wants to go live in my lung. Well, at least I'll be in the hospital, right? At the same time. I feel like I have dodge so many bullets in the past 5 months, there must be a reason, so I'm probably more anxious than I should be. I've had lots of surgeries in my past. Nothing serious ...knee replacements, hernias -- that kind of stuff. But this is the only one that involved clots. I'll be glad when this is o-v-e-r!!!!
notsopatient
notsopatient
Oh lordy, that doc's response makes me want to roll my eyes but yeah how disconcerting. On your original question about what they do if you have a new clot, I had one after a lung wedge biopsy and they said they can't give systemic TPA because it will also dissolve the clots at the healing surgical site - so they threaded a catheter through my groin and heart to spray TPA directly onto the clots in my lungs. That's very rare though (they said it was only the second time they'd done it), most clots are small and unthreatening enough to just do the standard heparin/warfarin treatment.
soola
soola
Well, I had the surgery last Thursday and everything turned out just fine. I had a team of anesthesiologists who were different than the fellow I met in pre-op. First of all, they were very good looking, ha ha -- but they were also reassuring. They told me that although they understood this was a new situation for me, and it was scary, they reminded me that THIS IS WHAT THEY DO. They knew ahead of time that the clots could be a "situation", and they were prepared for anything that showed up. Turns out, the clots were a non-event. They didn't interfere with the surgery. Now now the surgery truly is O-V-E-R. I'm awaiting a biopsy which will take another week or so but the surgeon said everything looked as they thought. Crossing my fingers and toes this is true, in which case, my cancer is out and I can start living my life again once I'm healed. And yes, I'm still short of breath but that I can deal with for as long as it takes.
rmb
rmb
Glad to hear it! Hope this all behind you!
notsopatient
notsopatient
Excellent! I am crossing my fingers and toes for you too.
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