I'm sorry you have to stay on longer than you want. Although, six months is pretty standard. And I know... the bruising is so random. Sometimes I'll hit my arm or leg good, and no bruise, and then sometimes, I'll have pea size bruises all over my body for no apparent reason.

I know that "rat poison" reference is popular but so many modern medications were derived from something used for another purpose. My mom, dad and brother all had cancer, and I never heard any of them refer to their chemo as "mustard gas." I mean chemical warfare is about as serious as it gets.

Hang in there. You do your time on warfarin and then you're done. So don't lose heart!

You said:
***I still have impact from the PE*** and ***see if the defect has resolved***

Could you elaborate more about what the 'impact' and 'defect' is? Did they still see emboli in your lungs? (I'm a details sort of person.)

As rmb said---- that's pretty 'normal' (6 months tx) but still hated by all of us. I hope you don't have to stay on longer than 6 months.

Yeah, me too. I mean no one wants to be on it any longer than necessary. I totally get that.

rmb: It's not that I did not have the expectation of going off before 6 months. But I had a 14 day bleed this past month, for which I was seen twice in two different German hospitals during my vacation. They confirmed that it was not a cycle with an ultrasound. I was bleeding 3-5ml every 60-90 minutes a day with huge clots. That comes to ~60ml during the day, plus the nighttime bleeding....or at least half a liter of blood, every day. And that's while my INR was at 1.8. And guess what, my hemoglobin is on a downward slide and my PCP is now testing me for other things.

The term rat poison helps me to cope with the seriousness of the situation....call it gallows humor. I don't want to do that again.

The VQ scan checks where the air goes, and where the blood goes....you can't see the emboli, but you can see where the circulation is affected, and where the air can go, so it's more of a way to see how the PE is effecting your ability to breathe and absorb oxygen.....it's not a test that is conclusive but indicates continued circulatory/respiratory limitation for the doctor.....

cave76: They compare images, and if the images don't correspond with matching voids etc, they call that a mismatched defect. You can't see the emboli, but can see the effects......Like wind, you can't see it, but you can see it blow down trees, so you know it's there.

My fear is that if at 4.5 months, I still have these voids, it's going to be longer than six months of rat poison, and honestly, they set the expectation that the clots would be gone in 4-6 weeks.....but if they were gone, then there should not be the defects. It also worries me because I've had some other health issues and don't want to wind up with scar tissue in my lungs as a swimmer.

@ceallachK---

Thanks for answering and you explained it beautifully

Re: gallows humor------ that's the only way I cope with a serious illness (Lyme). Now I can add PE to that. Oh, boy, yippee!

I get the dark humor. It's how I cope with having ulcerative colitis. If I didn't laugh at shitting my self, I'd cry my eyes out. Guess every one's got something to bear.

Sorry you're having so many issues.

Hi!
I am 7 months post my pe. I had similar situation at 3.5 months. Started coughing up blood again, did the VQ scan, it was unchanged. I was very depressed and panicked but my doctor explained that its fairly normal to have an abnormal scan because it takes your body time to heal areas of your lungs that were damaged, it doesn't mean that the clot is still there. Especially if you had parts of your lung collapse and etc. Its like after a hurricane is gone it takes time to rebuild. I had a CT scan 5 months post pe and the clots were gone, my lungs were clear. Its takes everyone different time to break down the clot, heal the lungs. Be patient with your self, don't stress so that your body can focus on healing!

Just as a side note. I hated Coumadin too. My doctor switched me to Lovenox. Its still a pain in a neck to give yourself injections but I love the freedom of not having to worry about my inr, testing and etc. There is also arixstra or something like that which is a once daily injection. Please discuss options with your doctor.

I know that there's options and I researched some of them. Given the sense of relief when I came off the Lovenox, I don't think that's a good one for me.

Pradaxa, one of the newest, is really bad because if you get a bleed, it can't be stopped in time under most circumstances. The protocol is very specific, but not commonly known.

I have an appointment with my doc to talk about managing the bleeding against the need for warfarin.....some of the things that he was talking about were permanent solutions to what should be a temporary problem, which I won't do.

Saw my doc, he was very reassuring. I see my new GYN MD Thursday and my pulmonologist on Friday.....my PCP wants to hear from everyone to see if there's a way to manage the bleeding against the anti coag.

He also said that the clots went in kind of a fan formation so that they were very distributed....since the circulatory system in the lung kind of looks like a fan, this is probably not good.

I feel a lot better after seeing him, and more hopeful.

He also said that my case was complicated and won't be easy to resolve.

That really sucks, your situation. I'm sorry. I hope you feel better soon. Keep your head up! :)

@ceallach----- I'm also sorry. Did you get any idea of how long resolution might take? Or what that involves?

My PE's were spread over all the lobes also. My second scan (less than a year later, who's counting?)---- the radiologist reported 'even more' but who knows?

No idea.....they're going to rescan at 6 month mark. same as before, anti-coag, minimize vit k, etc.