Pulmonary Embolism Support Group

Hi Sterling, I'm sorry this has happened to you and I hope you get better soon.

Did they draw blood before starting you on AC therapy and run some genetic tests? If not, are they planning on running the tests once you complete your 6 months? It is worth seeing if you have any genetic predispositions to clotting (it does not necessarily show up in family history), though in all honesty it probably will not change your treatment. Unless you have a major genetic disorder (which is hard to imagine since you have made it this far in life), then the treatment is basically put you on AC for 6 months and if you ever get another PE or DVT then you are on AC for life. Personally I think it is good to know, especially since you can make some lifestyle alterations if you are at risk (wearing compression stockings on flights, long car rides, etc).

The birth control may be the only reason, or it may be a strong contributing factor, but it certainly was a factor.

If you are on coumadin for 6 months and your INR stays in therapeutic range for a good portion of it, then there isn't much chance you will have any clots left in your system. Personally, I would push for them to check your legs, but really I don't think they will find anything.

Also, I don't know what kind of BC you were on, but I think recently there has been one pulled from the market for this very reason. You might want to look into it.

Good luck and get better!

Hi, Sterling; I'm the same age as you and had a few small PEs at the end of June. I think themedulla gave you great advice. I had tests for those genetic conditions done when I first arrived in the ER and one came back positive, but I'm going to go off the Coumadin in a few months and get re-tested. If I have the condition I may be on Coumadin forever, which I wouldn't like much. So we'll see. This was done automatically in the hospital and if I'd gotten all negative results I probably wouldn't even have known the tests had been run. Follow up on those tests if you can.

Birth control wouldn't have caused problems before--you don't know it's a problem until it causes THE problem, apparently. Somewhere there's a chart that shows all the contributing factors to a DVT or PE, and birth control pills (especially "third generation" ones like Yaz and Yasmin, and certain others) contribute several points. In the absence of anything else like certain kinds of injuries, an international flight that you didn't move around on, etc., they're going to point at the BCP (and even then, the BCP would be assumed to have added to the chance of the other thing making the blood clot happen, I guess).

As for seeing whether your clots have been going away satisfactorily, as I understand it, doctors are hesitant to run another CT scan later on due to having to expose your chest to more radiation. I'm going to ask about it when we get toward the end of my Coumadin term, anyway.

My doctor *did* have my upper legs checked for clots via ultrasound, since those are a common place of origin, so you could ask about having that done.

Good luck!

Hi Sterling. I would definitely be asking to have the gentic testing if it was not done before starting your anticoagulants. I didn't know I had 2 clotting didorders until I had a PE. I did have my legs scanned the second time I was in the hospital-1 week after diagnoses- I didn't have any leg pain then-but had broken my leg and possibly torn my calf muscle 3 months prior. I never found out where my PE came from either. I may have had others and not known it because I was not tested. I am currently on Coumadin for life, but will have an appointment with the hematologist tomorrow -had never seen one before in 2 years-had to ask for an appointment. He says I may not need to be on for the rest of my life. I don't know what I will do if that is what he decides.

My advice to you and all newbies is 1. Learn all you can and be your own best advocate-no one else will do it for you. 2. If something doesn't feel right or sound right-then ask questions until you are satisfied or go somewhere else where you are listened to. 3. If something is more painful or feels worse then usual-doctors work for you -call them or go to the ER -better safe athan sorry. 4. There is an anxiety ride that goes along with this that they fail to tell you about before you leave the hospital -it is normal and can get way out of hand if you don't get counseling or medication before that happens. 5. Slow down and take it slow -if you try and go too fast -your body will revolt and you will know. Besides -maybe someone is trying to tell you to slow down and see what is out there while the rest of the planet is on light speed! 6. Remember-you are a SURVIVOR - so you still have things to do here on earth. Maybe things you didn't see before -so keep your eyes open. It is going to be a roller coaster ride that you didn't ask for -so hold on tight and take one day at a time.
Blessings, Teri

I agree you need genetic testing. and the repeat scans vary.... I was told by a cardiologist that sometimes they never "go away" but after 6 months they will be either disolved or firmly attached to the "wall" or your artiries. I would go to some kind of specialist if you arent already.

I had two genetic test,one for Factor V one for mutation II and thats all. I had a repeat scan 4 months post due to a bad lung infarction, all had healed and the clots were gone by that time. A hematologist ok'd my Dr to take me off coumadin after 8 months. I think you should at least have Factor V tested for, and it that is positive for 2 genes then get more test. More than one clotting disorder could mean coumadin for life. Luckily I had one gene Factor v and not mutation II. My Dr said its a wait and see game now to see if I have any more problems.

Hi Sterling,

I was diagnosed a month before my 30th birthday and they reckon it was the pill I was on (Dianette) that caused the clots.

Haha, I like your dalmation story - my doc says my lungs look like a star-studded sky ;-)

I already knew I had a clotting factor, but that didn't change the standard plan which was AC for six months and then that's it.

It is only because I had ongoing problems and was referred to a haematologist that I had some further tests and scans before it was decided that I could stop the warfarin (been off for four days now).

I think it is a good idea for you to push for your genetic tests as it could make a difference to your treatment. For example if you are monozygous or have more than one factor in which case it might be safer to be on lifelong AC.

Saying that, some people from the States have voiced insurance issues about known genetic factors. Not an easy decision...

Take care and continue with your wonderful patience :-D

The point of origin of the clots could be pelvic as well as in the extremities. In at least one insance amongst the people here it was finally found to be a ventricular fibrillation in the heart. Knowing where it came from would provide some perspective but not everyone gets to find out. I would say a doppler scan of both legs would be in order, since that is often the point of origin.

The battery of tests is best listed at http://www.fvleiden.org/recently-d... . I had a smart hematologist who tested me for FVL and 20210 (Factor II) before I was to go off warfarin, given those are common among the caucasian population of which I happen to be a member. Also, warfarin does not interfere with screening for those conditions. FVL was found. That test, in combination with follow on doppler and CT, and the not so good outcome of a trial departure from warfarin after 11 months, were all sufficent that I stayed on the stuff.

Like you, I had no family history of venous clots, but 80 to 90 per cent of those who have FVL never see ill effects. I had no pain, just SOB that was spreading to less strenuous activities. The pain of recovery was like getting multiple stabs, but it abated after a week.

If you were healthy before PE then it is normal to have no more Dr. appts except for AC monitoring. Further testing becomes due when evaluating warfarin continuation or cessation. What is concerning is any notion that you can simply be pulled off it w/o updated blood, doppler, and/or CT tests. Such an action is seriously out of date and looks like the stuff of bureaucratic health systems. In this country, and as a service family member, you deserve better. In short, you should be fighting the bureaucracy for such testing. Read up all you can. To get some corroboration on the empty-headedness of physicians about this I suggest http://www.stoptheclot.org/about_n... . They won't like it when you become knowledgeable and are aware of their mistakes, but in time you will build mutual respect with them.

Yes, b/c could be and likely is a factor, but such b/c caused events often (if not most of the time) go hand in hand with previously undiagnosed clotting risks. Just because you had one risk factor does not mean there were not others.