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.
I have started thinking about this even more after reading another post, but didn't want to hijack the thread, so here i am. :o)
As I have mentioned a few times, I am about to go off warfarin in February and repeat all the genetic testing. Depending on the results of course, I will then have to decide whether or not I keep taking the meds. My instinct is to stay on them. I just keep thinking, this was (as of now anyway and what we know) an unprovoked event. And it happened so fast and so suddenly, that I am scared to death of a repeat clotting event. Scared thnat next time I will not make it to the hospital in time. Now knowing the symptoms does not comfort me in the least, as one, I still have many of them, and two it all happened in such a short short time... 30 minutes tops. I was lucky to even have that!
I know I have to weigh the pros and cons of being on warfarin. Somehow though, my mind is blocking, for lack of a better word, the risks of being on it. I also know that the fear of a repeat event should not keep me on it. But what do you do??
This is going to sound totally insane, but there is a small part of me that wishes I come back positive for something so that I will not even have to decide. The flip side of that is obviously not wanting any kind of "condition" and more importantly, something that could be passed on to my kids.
Even in therapy, I just can't seem to get past this fear. All of it. I cannot at this point imagine feeling safe without medication. Yet, every time I get a stomach pain or bad headache I have to talk myself out of the idea that I am bleeding internally! Yup, I am crazy! :o)
This probably should have been a journal entry, sorry. Need to try doing one of those some day! :o)
As I have mentioned a few times, I am about to go off warfarin in February and repeat all the genetic testing. Depending on the results of course, I will then have to decide whether or not I keep taking the meds. My instinct is to stay on them. I just keep thinking, this was (as of now anyway and what we know) an unprovoked event. And it happened so fast and so suddenly, that I am scared to death of a repeat clotting event. Scared thnat next time I will not make it to the hospital in time. Now knowing the symptoms does not comfort me in the least, as one, I still have many of them, and two it all happened in such a short short time... 30 minutes tops. I was lucky to even have that!
I know I have to weigh the pros and cons of being on warfarin. Somehow though, my mind is blocking, for lack of a better word, the risks of being on it. I also know that the fear of a repeat event should not keep me on it. But what do you do??
This is going to sound totally insane, but there is a small part of me that wishes I come back positive for something so that I will not even have to decide. The flip side of that is obviously not wanting any kind of "condition" and more importantly, something that could be passed on to my kids.
Even in therapy, I just can't seem to get past this fear. All of it. I cannot at this point imagine feeling safe without medication. Yet, every time I get a stomach pain or bad headache I have to talk myself out of the idea that I am bleeding internally! Yup, I am crazy! :o)
This probably should have been a journal entry, sorry. Need to try doing one of those some day! :o)
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
I can completely and totally relate to 100% of what you said.
I often think that if I am anxious and worried now, what will it be when I come off in 5 months? And they aren't even going to do any testing on me to see if it is genetic. I have to 'wait and see' if it happens again. I too worry about not being as lucky next time, and the feelings of healing are the same symptoms of having another PE.
I know a lot of people say, 'Would you have worried about this pain/feeling prior to the PE?' and that is a very hard question for me to answer. Partially, because even when I was in pain from the PE, nothing in me told me blood clot. I didn't even want to go to the ER, to be honest. It was Thanksgiving Day, I wanted to eat and drink...and not ruin every one else's day. I had SOB while out on a run a week prior to the PE, I thought it was because it was cold out. So...even the initial symptoms didn't send me to the ER.
I honestly wish they'd test me for genetic problems too...and I wish they'd find something. I too don't think about the side effects of warfarin, despite it's 'black box' warning, internal bleeding, and all of that.
I also do not want to go back on anti-anxiety medications. I've been reading side effects of those, and they scare me too. So....it makes all of this so difficult.
I actually tested positive for Factor V Leiden and also weakly positive for the Lupus Anticoagulant. My hemo thinks the Lupus Anticoagulant may come back negative once the clots are fully removed from my body. However, FVL will not go away obviously.
Anyhow, despite coming back positive for FVL, I still have to make the decision. But I don't need to make the decision until November. Like you, I am also struggling with the decision. For me, I don't like the limitations on my life- like no skiing, limiting alcohol usage, etc. but I am also afraid of a repeat clot event.
I am also 31 years old and hope to have babies some day. So, I will have to come off the warfarin at some point and switch to Lovenox.
Anyhow, this is a tough decision so *hugs* coming your way.
Doctors do not want patients on this unless it's truly neccessary, at least from what I've been told.
My hematologist said that if I did have a genetic problem, it would a) not change the course of my treatment, and b) not change how they'd treat me if I had another PE.
My risk factor at this point was birth contol. I have a few other assumptions what might have caused it, too and it kind of created the perfect scenario that a PE or clot might have formed.
Besides the pill, I sat A LOT for the two weeks prior to my PE. And I sat cross-legged. For hours at a time. I'd sit with my knees tucked up under me at night while watching TV. My running mileage dropped off a little after I ran a half marathon in September (then I took an 8 hour car ride about a day or so after the race, and I didn't get out of the car the entire time). So...I try and think back to things like that.
Also, doesn't help that my heart rate can go under 60 while I am resting...which I've been reading isn't that great either.
Please keep me posted.
Fundamentally, we're faced with a choice where one option is to live worrying about every pain in our chests being another PE, the other option is to live with the lifelong restrictions and dangers of being on warfarin.
I'm in the same position as you - if no other cause is found before June, I am just expected to live a normal, warfarin-free life. No counselling or advice, just go ahead and live normally. Not the most re-assured I've ever felt!
The first time I was on warfarin, and my 6 months was about to end, I was nervous about coming off, but after I stopped taking it, the nerves eased up and you get so distracted from thinking about it that it doesn't occur to you after a while to be nervous. I think you can't really accept that it until you're off the meds, like you're a bundle of nerves up to that day, then you stop taking it, and then you just go on with your life because what other choice do you have. You may have some anxiety, but that starts to dissipate. I don't know if there's a way to get in a good place about it prior to actually going off of warfarin.
Listen, I would be off warfarin in a second if I wasn't so seemingly prone to clotting. I would like to be free from the drug, and would have taken that option if my hema hadn't seemed so concerned.
My doctor says I am a lifer, but from what I have read on this forum, I can chose otherwise. Like other people have mentioned, I almost wish I didn't have to make the decision because it is a scary decision to make.
I can think of a few things that I did that could be the culprit, but of course, like most everyone else.....I can't be sure. In hopes to make my decision easier when the time comes, I have started to make lifestyle changes (quit smoking, exercise daily, eat healthier, etc) so they are second nature/habit by the time the decision comes and maybe I will feel more comfortable being off Warfarin.
I hope everything works out and ultimately: no matter what you decide, it will be the right decision.
I suppose if I had to stay on warfarin I would of given in to the fears..and gone on with the risky activities in my life..
Carolyn2, I am in NE as well, Southern NE. Been an easy winter here so far!
M2LR.... my risk factors were basically that I smoked, slightly overweight (pehaps 20 lbs maybe) and I was fairly inactive. Other than that, nothing obvious.
Thanks again!
I don't know if you are seeing a thrombophilia specialist (blood clot disorder specialist), but if not, here are some in the New England area.
Depending on where you live in Southern NE there are several exception blood clot specialist. In Connecticut, Dr. Mike Paidas is a OB/GYN who specializes in blood clotting disorders. Mike is a great guy with a lot of passion for helping patients.
Also in Connecticut up in the Putnam area at Day Kimball Hospital is Dr. Jeffrey Gordon.
In the Boston area, you have a couple of great specialist, Dr. Sam Goldhaber (my doc) over at Brigham and Women's Hospital and Dr. Ken Bauer at Beth Israel Deaconess Medical Center.
If you had mentioned Northern NE then I would have recommended Dr. Mary Cushman at the University of Vermont Medical Center.
Regards,
Tom in Connecticut
Here are two reference sites that may interest you. The first if from an organization that I co-founded called the National Blood Clot Alliance (www.stoptheclot.org).
The second if from an organization I currently volunteer with called Clot Connect. It is a program under the University of North Carolina's blood clot outreach program. My good friend and colleague, Dr. Stephan Moll, is the medical advisor there. He also helped co-found the National Blood Clot Alliance (www.clotconnect.org)
If you decide to go either to Boston (Dr. Goldhaber) or Yale (Dr. Mike Paidas) please let me know and I'll get you their contact information (message me through this site). One thing about either of these gentlement is, there is a waiting list so seeing them may take a little time.
R/
Tom