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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deleted_user 04/10/2010

My doctors believe I have had a second PE after starting warfarin. I'm finding it hard to get information about this as most people who have recurrent PEs do so after ceasing warfarin etc. Although the doctors said that normally it is highly unlikely, in my case they believe I did have a second small clot in the peripherals of my lung. The PEs both showed up as a number of hours of intense almost muscular pain around the lungs followed by a variety of chest pains and irritation which I basically have day to day now. I had a third episode aswell today which was very similar to the two PEs and I wonder if I may have had another small PE. Each time I feel like I have been hit by a bus, sleep a lot immediately after, then I just go back to my usual 'recovery pains'. (Shoulder pain is a very constant problem, day in, day out, irritating and driving me mad.)

I want to know what this means. Does this mean I am more likely to get clots even though I am on warfarin? Does this mean that if I feel symptoms I should be following them up every time? Is the warfarin going to treat the small clots anyway so don't worry about them? Is it worth getting a Vscan if I have another episode? Is there any condition that causes recurrent clots whilst on warfarin that I could check out?

Any information would be appreciated.
Cheers,
Gail

TossNTurn 04/10/2010

I haven't experienced this personally. (My clots only show up when I'm NOT on warfarin.) I am wondering though, what were your INR levels when you got the additional clots? Were you therapeutic?

I know some people (like my FIL) have to keep their INRs a little higher than average to avoid repeat clots.

Ferr 04/10/2010

Gail, yes even though as your doctors have said it is highly unlikely to throw additional clots whilst on Coumadin it can and does happen. I have had 2 clotting episodes while off coumadin and 2 while on Coumadin. That's when they realized they needed to raise my PT/INR therapeutic levels. Also the possibility is out there that the Coumadin might not be as affective on you as other medications such as lovenox or heparin so they may need to change you. I know Ski had to switch from the Coumadin to Heparin because the Coumadin just didn't work on him. Talk to your doctors and see if they might need to change your PT/INR therapeutic levels to prevent future clots from happening. Also if you are a lifer it might be beneficial to you to purchase a home PT/INR monitor. Most insurance companies do cover most of the cost if your doctor will write a prescription for it. I bought mine through a company called INRatio and they did all the paperwork for me.
With that said in most instances people who are on anti-coagulants don't usually have additional clots while on the anti-coagulants, LOL I guess your just in that 1 in a million club like myself and ski.
Hugs
Ferr

More2be 04/10/2010

One more suggestion involves that your case is relatively new. Many if not most of us were told that the greatest danger of embolizing is with new clots, whereas older ones are more stable. However, there is nothing to rule out that existing clots, whether found or not, may break and move after treatment has begun. My docs put a vena cava filter in on the second day of hospitalization for just such a contingency.
If there is any chance that is what is going on then you still become safer as treatment progresses.

deleted_user 04/11/2010

Thanks you guys. Well today my pain was better but then I developed SOB with chest pain and SOB is my little rule so I went to emergency and my oxygen level was between 80- 96% but generally 92-96 most of the time. I had an x-ray and it showed I have a chest infection. He thinks it must be viral as I don't have a temperature. I feel like I have been hit by a bus. I still have SOB but I guess it is explained now. They did an artery gas test which showed I have enough oxygen in my blood. Hope they are right but at the moment I am too exhausted to care.

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