I want these answers too!!

My hematologist keeps telling me that they don't do a second CT scan to see if the clots are gone, that the body will just dissolve them on their own.

But how will *I* know when they're gone?

Very good questions! I'd like to know the answers as well. For me, (and I didn't realize this at first) but I had like a really bad calf cramp in my right leg about a month before I ended up in the hospital with PEs. It was only then that I found out that calf cramping is a symptom of a DVT (which the ultrasound confirmed). My PE symptoms were only SOB. I had no pain or anything and that's whats kind of scary because anything can cause shortness of breath! I wonder what some others will say.

Same questions here. :o( I had no signs of a DVT, and it wasn't until almost passing out that I knew something was wrong. Couple of months later, I had a panic attack and would have sworn it was another PE. So, how do you know? All of these things have been going through my mind especially in these last few weeks since being off of coumadin.

I'm asking all these questions too. I had zero DVT symptoms, the first symptom I had was chest pain and not being able to sneeze and it gradually got worse and worse. It helps to know we are all in the same boat.

I can say your doctor will do a 2nd CT if you ask, hell, mine is doing one and I didn't ask.

Depending on the severity of the clot, it will not all go away. As part of the healing process, your body creates Urokinase which will break down a majority of the clot. What isn't dissolved will become a fiberous scar and remain at the site (chronic DVT). This scar is something you don't have to worry about as far as it breaking off and going to the the lungs. It becomes a permanent part of your vein.

The result of the scarring and any associated valve damage is a condition known as Post Thrombotic Syndrome (PTS) (also known as Chronic Venous Insufficiency or Venous Stress Disorder). This is the associated swelling you may have in your legs which requires the use of compression stockings.

As far as risk of reoccurence. Once you have a clot, you are at higher risk then a person who doesn't have one. How much of a risk depends on several associated risk factors: thrombophilia (blood clot disorder), weight, age, activity level, other medical conditions, family history, etc..

Because of this, it's hard to give a person a percentage of chance of reoccurence because each person's own medical history varies.

Length of time on Couamdin may also contribute to the risk of reoccurence. what I mean for that is, if the clot was caused by a clotting disorder, longer anticoagulation management may be required (longer then 3-6 months) or even life long. Once the Couamadin is discontinued, there may be a up to a two year period where a person is at great risk of reoccurence. Again, the numbers are not really known and more studies are needed.

You guys, please find a way to try to relax. I know it's not easy, but the anxiety alone will make you sick.

In the US, they generally don't rescan. Sometimes they do, but most often then don't. Typically, the clot is resolved during the time you're on warfarin. That's why they keep you on it for a prescribed duration (only 3 months, 6 months, a year) because based on the extent of the clot, most clots are known to resolve during that time.

Once your off warfarin, you just have to listen to your body, pay attention without making yourself go mental, and if you suspect a clot based,, go to the ER. The longer your off warfarin, the less freaked out you'll feel about how you will know. All you can rely on is your instincts and symptoms.

One day at a time... seriously, this cliche applies... one day at a time.

I had my first PE in 2008. I was on clexane for 12 months because I was in early pregnancy when the PE was detected. When I came of the clexane I assumed that I probably not get another. The pregnancy was thought to be the cause.
Late last year I was waking up at night coughing and was fairly short of breath. After about three weeks I went to see the doctor thinking I may need antibiotics. She asked me if I had ever had a PE as my symptoms were similar. Strangely I had put it out of my mind so it hadn't occurred to me. I was sent for a VQ scan that afternoon and admitted to hospital shortly after. My second PE was found. Was it worse than the first? it was different because I wasn't pregnant and I didnt have to take an oxygen tank everywhere with me. Still recovering and still adjusting to the shock of a second one. It has been an interesting experience. With the first I was grateful that I carried my child through the pregnancy and we both survived. With this one I am focusing on living life.

thanks everyone! i will just go with the flow and deal with it all as it happens - or not - hopefully!

I don't think I would want a repeat CT, just to avoid the extra radiation. For a lot of folks, it won't matter if the clots are still there or not. As Retired Navy said, you should be fine either way.

Also, just from personal experience ... i've clotted three times. Two DVTs and then my bout with PEs in January 2010. I have to say that the symptoms were a little different each time, but what wasn't different was my gut feeling. You really do need to trust yourself on this! If you feel like something is wrong ... like really feel it, down in your gut ... and you can separate the worry from that panicky, hysterical feeling that we all get ... I would just head to the doc or ER ASAP.

For me, my biggest diagnostic tool has been my own gut feeling. It takes a while to trust it and hone it, but it has been helpful while sorting through what is *really* going on in the months after diagnosis.

Hang in there ... take a deep breath ... it does get better.