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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Hematologist visit

Jean1014
Jean1014
Hello all! I had an appointment with my doctor this week, and I think zI now havae more questions than when I went in! I think way too much! LOL

So here is the situation. He has decided that come February (March 1st will be my one yr from PE), we will do another chest CT, and if all looks good, I will come off the warfarin for testing. He also said I will be off it for 2-3 weeks, without any lovenox either. Honestly, this is making me panic! What if I reclot in that short time? Does that happen?

He also said it would still be my decision, if the tests are negative, whether I stay on it. However, he strongly suggested that I don't because of the risks. Yet again, this is making me panic!

IF the tests do come back negative (I was borderline for a few when I had the initial testing in the hospital, but he said that didn't really mean anything), then there is no known cause. In my mind, if there is no known cause, it can happen again at any given time. What if I am not so lucky?

I know most people, or a lot anyway, want to get off it, but I am so nervous. To ne honest, I have let this whole thing take hold of my life and I recognize that and am taking steps to help myself. Not easy!

Thanks for listening as always, and any imput would be greatly appreciated!
rmb
rmb
Hi,

A lot of "what ifs" there, but no one knows what's going to happen to them. I mean, what if I get hit by a car walking home from work, what if I fall down the steps. I'm not trying to be a smarty pants. I just think what ifs can prevent us from living our lives. If I worried about what if I get hit by a car every day, I'd likely not leave my house, ever.

I think most people are pretty nervous to come off warfarin, so that's very normal. If you've only had one clotting event, even if it's for unknown reasons, they typically don't keep you on warfarin for life.

You doc is giving you the option and merely making a recommendation. So I would say, gather the pros and cons, see how your tests pan out, and decide what you want to do based on risks/benefits. If in the off chance you do clot again while being off warfarin, you will have the benefit of having had a clot before so you will know the symptoms right away. You kind of have to find a way to trust your instincts again.

Try to take this one step at a time. It can be very overwhelming to think about and the fear compounds it.
spiegal
spiegal
Hi, I feel the same sbout coming off warfarin, I had a clot and pe they think because I was sedentary awaiting a hip replacement, after being on warfarin for a year this november, the surgeon at the hospital I had the op at said I needed to stay on Warfarin for life, the hemo I have been under said prior to my op, I needed to stay on it for a further 3 months after surgery, I dont know where I am, I dont reallly want to stay on it, but im also worried about 2 opinions.
Jean1014
Jean1014
rmb, that is just it... I am not sure I will know the symptoms in time. I had no obvious signs of a dvt (swelling, pain, etc) and nothing that would have ever made me think PE. I went from feeling fine that morning, other than a headache, to walking outside and feeling like I was going to pass out. Within 15 minutes of that, I had SOB and chest pain. 15 mintues from that, I was on my way to the hospital and almost didn't make it in time. When I got there I was blue and needed to be given tpa. So I guess that is where my biggest fear lies. It was so close that what if next time I don't make it in time. Nevertheless, as you said, I need to take this one step at a time.

Spiegal... I hope your doctors can get it sorted out! I am sure the differing opinions is more than frustrating! Wishing you all the best!!
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